Autism: Magical Thinking

The autism field is knee-deep in magical thinking. Always has been as long as I can remember.  Pseudoscientific false cures in recent years have included Secretin, Facilitated Communication, eliminating MMR vaccinations, Hyperbaric Oxygen, Chelation and Gluten Casein free diet.  Recently, various technology aids have been the focus of sham cures.  There will always be a swindler waiting to victimize vulnerable people. 

But charlatans find it difficult to sell their wares without cooperation from the news media. And many in the news media are all too eager to cooperate with frauds. Members of the press greatly prefer telling stories about seemingly miraculous emergence of signs of intellectual and emotional typicality previously “locked-up” with a person labelled as having severe autism, than reporting the laborious process that actually produces typical skills.  They almost never tell the whole story, i.e. were the remarkable skills evaluated independently  to see if they were actually remarkable, or how the emergence of the skills actually came about.  An interesting case in point is the Carly Fleishmann story that has made the rounds in the UK and Canada, and to a lesser extent than in the US, though there was a report on ABC News awhile ago. (Thanks to Prof Bob Remington of Southampton University for drawing this case to my attention.)

Carly Fleischmann Keyboarding

A14 year-old girl (now 18) who appeared to have severe autism is described in news media reports as suddenly, almost miraculously, beginning to produce long, complex sentences, using sophisticated vocabulary, using single keys on a computer key board.  There are problems with this alleged miracle.  Though she is described as “non-verbal” she must have had a very large receptive vocabulary before the “miracle” happened. One wonders how this allegedly non-verbal child came to understand and produce sentences more typical of a bright typical teenager or adult? Not credible. See: Magical thinking. 

But, then when bombarded with a variety of questions and false claims made by others, especially about Facilitated Communication, Carly’s Mom clarified things. No magic at all. “When she was 2, we starting with PECS --did picture exchanges for every imaginable item under the sun. Many of the games I bought her had to do with reasoning and logic and were highly visual in nature - memory games, sequencing, matching -- these were with pictures, words, numbers, etc. We had visual schedules (with the words underneath) for everything she had to do --getting dressed, using the bathroom, tidying up, meals, going outside, etc. The whole house was also labeled -- my son went crazy with the label maker. Every item was stickered. We then moved to communication binders --we started that by category --food, acitivities, clothes, weather, feelings, etc. She never got to do what she wanted until she used the communication binders to show us. These were laminated sheets we made up with the mayer johnson picture symbols in them as well. We kept that going for a long time and all this time her ABA programs were also teaching her how to spell and read. We created stories for her using the mayer johnson software and didn't just read them to her --she was looking at the pages as well. We kept the binders for ease of use and portability but we were also learning about augmentative communication devices since it was clear her apraxia was so severe. We also taught her some sign language but realized that while we understood the signs, most of the world did not and so that was not going be to a functional option for her. The first machine was a Dynavox, the second was a Springboard and the third was a Lightwriter which we used in conjunction with her laptop. We thought she would like the Lightwriter better but she preferred the laptop even though it is more cumbersome --but it is what other kids have and that is a concern to …” (A Live Toad Every Morning, February 28, 2008) 

Parents of children with autism are, in effect, victimized by members of the news media who get their jollies from telling false stories about autism magic.  They write an opening line describing a child with a serious disability, skip the middle, and add a miraculous conclusion about magical recovery to normality resulting from a therapeutic slight of hand.  How can we better help parents fend against this need for the magical by both parents and the society surrounding them?

An imagined child with autism waiting to magically "Emerge" 

 I highly recommend Joan Didion’s book, “The Year of Magical Thinking” for parents of children with autism, especially those who have only recently learned their child’s diagnosis.  It may seem offensive to compare the death of a loved one with learning their child has autism, for they are light years apart in most ways.  But psychologically, embodied deeply within the experience of parents of a child with autism, they are remarkably similar.  Though the book is a few years old, there is much to be learned from Didion’s book for parents of children with autism.

Magical Thinking is not academic discourse about grief or a finger-wagging polemic of the profoundly disturbed reactions of people to the death of a loved one.  This is not a Kubler-Ross psychoanalytic exploration of grief… not at all.  It is a straight-faced, compassionately humane exploration of magical thought processes of those suffering extreme losses, and the equally mystical reactions of the society surrounding those experiencing the loss.

Didion’s book is based on her own tragic experience in which “the only daughter of Didion and her husband, John Gregory Dunne, fell into septic shock from a runaway pneumonia infection. Her doctors put her into an induced coma.” On returning from the hospital to their apartment. While the couple was talking over supper, John Gregory Dunne suddenly died.

Didion wrote, "I had entered at the moment it happened a kind of shock in which the only thought I allowed myself was that there must be certain things I needed to do.”  All too familiar to every parent who has just received their child’s autism diagnosis.  Didion reflects on the people who believe "absolutely in their own management skills," the power of telephone numbers: the right doctor or donor or politician. She observes that this becomes at a certain point an evasion from reality.”

“Didion tells her story largely by tracing a kind of dance between two kinds of deceptive language: on one side, there is the half-secret, personal language of "magical thinking" that creates needs, interdictions, omens: I need to be in the one city where the dead person would return, if he came back; I cannot give away certain of that person's shoes; the dead sea gull and the typo and the undeleted e-mail message are signs. That internal voice, "magical thinking" denying its own desperation, whispers that the funeral ritual will restore what is lost…. On the other side, equally evasive, more subtly irrational, there are the voices of society. When a friend tells us about a terrible diagnosis, we may need to respond with an anecdote about someone we know whose brother-in-law survived just that illness with no problem, or we need to tell about an herbal tea that produces miraculous cures. Telling those in grief that they are "bearing it very well" or "being strong" can be not only presumptuous, but coercive: the voice of conventionality saying it does not want to be disturbed. These stoical platitudes represent a communal, anonymous kind of magical thinking or denial of reality.”  How many parents of a child with autism have been told about a miraculous cure, or the equivalent of Didion's “an herbal tea” that will make their child’s autism vanish, and urged them to try this curative talisman or suffer the consequences... i.e your child will suffer from severe autism all his life, and it will be YOUR FAULT!

Didion found reading these sentences especially apt, and they apply equally to parents of children with autism: "Persons under the shock of genuine affliction are not only upset mentally but are all unbalanced physically. No matter how calm and controlled they seemingly may be, no one can under such circumstances be normal. Their disturbed circulation makes them cold, their distress makes them unstrung, sleepless." 

My next essay in about two weeks will be about what to do after The Year of Magical Thinking has expired, and the actual, honest to God real future of their child with autism remains starkly before parents.  What do we do next?

Most of the latter part of this essay is based on Robert Pinsky’s review of 'The Year of Magical Thinking': Goodbye to All That” that appeared in the NY Times, October 9, 2005.  Sections in quotes are from Pinsky’s review. The Year of Magical Thinking is available in paperback and Kindle Edition from Amazon.com for $10-12.

Autism: What Did We Know and When Did We Know It?

Parents, teachers and various therapists often ask why we know so little about autism.  “Why” they ask, “after all of this money that has been spent, do we know hardly anything about autism’s cause or effective treatment?”  That’s a little like asking when you stopped beating your wife.  Problem is the premise is dead wrong.  We have learned an enormous amount that is literally making new lives possible for many thousands of children with autism.

Autism was first mentioned clinically by Leo Kanner in 1944.  The first behavioral study to teach children with autism was 7 years later in 1961.  In the 1970s and 80s only 1-2% of individuals with autism had good outcomes, most the rest spent their lives languishing in institutions or in sequestered “group homes,” which were custodial residences. 

In 1980s most people believed nothing could be done to improve the lives of children and older people with autism. They were referred to as “incurable.”  

The first major treatment follow-up study published by Ivar Lovaas in 1987 showed that half of the children with autism were be able to attend public school along side their typical peers instead of 1-2%, after 3 years 40 per hours of week of treatment.  That was just 43 years after Kanner’s first article.  Scientists concluded autism wasn’t caused by cold neglectful mothering as claimed by Bettleheim,  but by something that had gone awry during brain development.

The first advance in genetic technology making recombinant DNA research possible was published in 1972, and PCR, the technique permitting researchers to capture a tiny piece of DNA and make many copies so they could study in detail the error, was published in 1983.  The first study showing autism was more common in twins than unrelated people, the first strong evidence of heritability was published in 1977.

The World Health Organization first included autism in the ICD9 in 1975 and the American Psychiatric Association first included autism in DSM3 in 1980.

The first evidence of brain tissue differences in autism was in 1985. The first evidence that autism was linked to specific brain genes related to the brain chemical serotonin was published in 1997 and the first evidence that Chromosome 15 carried autism genes was published in 1996. One of the first studies using brain imagining demonstrated several specific structures that were dysfunctional in brain tissue of individuals with autism when looking at faces and judging emotions in 1999

The first widely accepted diagnostic test, the ADOS, was published in 1989 when it was discovered many more children had mild autism than was previously recognized.  The first evidence autism may be present as young as 18 months of age was published in 1992.

The first compelling use of a functional analysis method to evaluate behavior challenges in autism was published in 1994. Along with the Picture Exchange augmentative communication system. 

In 2001 an expert panel of the National Research Council reviewed all available evidence and concluded early intensive behavioral intervention was effective in producing sustained improvements of core autism systems with 25 hours per week of intervention over several years.

In 2005 Michael Rutter published a definitive article showing increased autism prevalence was due to better case identification and had nothing to do with immunization.

In 2008 a group at Harvard University headed by Christopher Walsh demonstrated within some types of autism the basic defect is failure to form brain connections due to specific gene errors, which can in part become overcome by intensive early experience which promotes new synapses.

Pivotal Response Training, an effective incidental teaching method for autism was described in 1993.  In 2006 and 2010 it was shown that other intensive behavioral interventions SCERTS and Denver Early Start can effectively improve core autism skills.

 The first evidence it was possible to teach children with autism to discriminate and express emotions was reported in 1996 and the first evidence that it was possible to teach empathy to children with autism was published in 2010.

Today throughout the US many hundreds of thousands of children are benefiting from various forms of early intensive behavioral intervention and about half are succeeding in regular education and the rest are making gains in special education settings.  Individuals with autism no longer live in institutions.

How do advances in autism research compare with other major health problems?

Cancer was described by Hippocrates in 400BC and various medical scientists over the centuries proposed treatments, none effective.  Toxic nitrogen mustard was used to treat cancer in the 1940s. Radiation was considered a “last hope” in the 1950s.  The first effective treatment was in 1989, mastectomy. 

Or consider heart disease.  Though various natural substances had been used during angina attacks for more than a century, it wasn’t until 1934 that the first cholesterol test was introduced.  In 1948 it was shown that plaque in blood vessels related to diet was shown to be related to heart disease.  In 1950 the role of LDL and HDL cholesterol became known.  In 1951 it was found that in low fat countries heart disease is rare.  In 1960 the blood test for insulin was introduced. The role of triglycerides found in 1971.  By 1984 millions of Americans are taking cholesterol lowering drugs.  By 1987 first statin drugs introduced.

In 30 years the field of autism research has gone from most individuals with more severe autism living in institutions or group homes, to half being mainstreamed in school.... truly remarkable gains. We now know most autism is genetically caused, there are several subtypes of autism, that specific types of brain dysfunction are the root causes of autism, and that for affected children many of their challenges can be overcome by intensive early behavioral treatment.  We also know there is no silver bullet, no magic pill, diet or other “biological treatment” that will “cure’ autism, such as hyperbaric oxygen or chelation.  But we know how to enable the majority of children with autism to live their lives at home and in their community alongside their brothers and sisters and peers.  Many graduate from high school and attend post high school education and job training .

While there is a great deal more to be done,  this is a story of remarkable progress.  

WHY I AM NOT A REPUBLIC!

The Republic party incorrectly refers to the Democratic Party as the Democrat Party*.  I had initially thought this was because none of them had studied grammar in school, but I’ve recently concluded it’s really because they seek to hide the fact that the Democratic Party is really Democratic and the Republic Party is really Plutocratic.  I’ll return to that presently.

Let me explain.  The Democratic Party is committed to American citizens’ right to make political decisions regarding their governance by individuals voting as provided by the 15^th, 19th and 26^th Amendments to the US Constitution, which is what democratic means. 

[Democracy is the ideal that all the citizens of a nation determine together the laws or actions of their state, requiring that all citizens have an equal opportunity to express their consent and their will. In practice, "democracy" is the extent to which a given system approximates this ideal, and a given political system is referred to as "a democracy"].

The Republic Plutocratic ideal is the notion that those with the greatest wealth should determine the policies of the government and the remainder of the populace is obliged to abide by the decisions of those with the maximum fortune and stop whining. 

While the Democratic Party is committed to the Democratic ideal, one person, one vote, that kind of old fashioned notion, while on the other hand, Republics contend it is in their best plutocratic interest to prevent racial minorities, elderly people who are disproportionately women, and college students between 18 and 21 years of age, from voting by whatever chicanery necessary.  They assume by the time the various law suits and prosecutions for their heinous activities work their way through the courts and they are slapped on the wrist for naughtiness, the 2012 elections will be long past, and they will be propping up their feet on the veranda of the White House and lighting their cigars with $100 bills . 

They contend that not only is it acceptable to commit various unconstitutional acts to suppress voting, but it is their solemn obligation to prevent ordinary citizens, especially the hoi poi of society, from voting.  They can thus assure only candidates who are supported by Citizens United Super Pacs have a chance of winning, that is, other plutocrats like themselves.  Their position is entirely understandable unless you happen to be interested in maintaining democracy in the United States of America.

*"There’s no great mystery about the motives behind this deliberate misnaming. 'Democrat Party' is a slur, or intended to be — a handy way to express contempt. Hendrik Herzberg, Journalist, New Yorker.  I suppose it would be like referring to the other party as the Plutocrican Party... not a bad idea now that I think about it. 

Open Letter to US Ambassador to the United Nations

I sent the following letter to Susan Rice, US Ambassador to the United Nations December 17, 2012, with copies to Attorney General Holder and Honorable Martha Doggett, Deputy Director, Americas and Europe Division, Dept. of Political Affairs, United Nations.  Ambassador Rice has not replied nor have I received response from Atty General Holder or Senator Klobuchar (D-MN) to whom I sent copies. If Ambassador Rice or the other recipients assumed my letter was an political gesture of some kind they were very wrong.  I am deeply concerned that a very great many Americans will be deprived of the opportunity to cast ballots in the 2012 election and it does not appear the US Government is taking meaningful steps to address this crisis. I included a brief bio about my own background to disabuse them of the notion I was some kind of crack pot.  IF YOU SHARE MY CONCERNS, PLEASE COPY THIS LETTER AND SEND IT TO OTHER BLOGS AND NEWS OUTLETS.  

Dear Madam Ambassador:

REQUEST: I am writing to you regarding the peril into which the American 2012 Presidential and Congressional elections are being placed, and seeking assistance from the United Nations to assure fair elections.  As a US citizen in good standing who has voted in every presidential election since 1960, I am seeking your assistance via the United States Mission to the United Nations and the Office of the United Nations Assistant Secretary-General for Political Affairs, because I am deeply concerned that the legitimacy of the 2012 US presidential and congressional elections is in serious doubt.  Because of failure of individual US States and the US Federal Government to adequately assure equal access to voting, fair and representative elections will require the independent supervision of an outside organization such as the United Nations to assure their validity. This may sound melodramatic, but it isn’t. It reflects emerging political reality of the electoral system in the United States.

AUTHORITY: This request is being made Under the Rule of Law- Democracy and Human Rights provision of the Office of the High Commissioner of Human Rights, an agreement to which the U.S. Government is a signatory:

Respect for human rights and fundamental freedoms and the principle of holding periodic and genuine elections by universal suffrage are essential elements of democracy.  These values are embodied in the Universal Declaration of Human Rights and further developed in the International Covenant on Civil and Political Right, which enshrines a host of political rights and civil liberties underpinning meaningful democracies.

The Universal Declaration of Human Rights, adopted unanimously by the United Nations General Assembly in 1948, recognizes the integral role that transparent and open elections play in ensuring the fundamental right to participatory government. The Universal Declaration of Human Rights in Article 21 states:  Everyone has the right to take part in the government of his/her country, directly or through freely chosen representatives.
Everyone has the right of equal access to public service in his country.
The will of the people shall be the basis of the authority of government; this will shall be expressed in periodic and genuine elections which shall be by universal and equal suffrage and shall be held by secret ballot or by equivalent free voting procedures.

FAIR ELECTIONS IN JEOPARDY:  Regrettably, free and fair democratic elections are in increasingly in doubt in our country, despite the Obama Administration’s belated efforts to assure protection of electoral rights through the Civil Rights Division of the Office of the Attorney General.  The importance of support from the independent United Nations Electoral Assistance Division of Department of Political Affairs cannot be overstated, as the 2012 presidential and congressional elections are only a year away.  This assistance is needed to aid in the observation and supervision of elections within the United States and verification of election results, including coordination and support for international and national electoral observers.  I, as well as many other Americans have no confidence, based on the emerging events within the United States at the state level, that fair elections will be possible otherwise in 2012. It appears many Americans’ who have the right to vote, will be selectively deprived of that right, by new state laws and regulations enacted within the past year.

Thirty Republican State Legislatures and governors within the United States have either already passed, or are in the process of pushing through legislation that would dramatically restrict the voting access of racial and ethnic minorities, college students, rural voters, senior citizens, people with disabilities and those who are homeless. As part of an effort to suppress voting, new photo identification laws that would suppress turnout of Hispanic and other minority voters are in the process of being passed.  In many parts of the country very few elderly voters have drivers’ licenses or picture identification. In some states people who have moved or changed addresses or names (e.g. married women) will be unable to vote. Voter registration opportunities are being curtailed, including early voting, voting on election day, and reductions in number of voting sites in poor neighborhoods. Plans are being developed to systematically deny large segments of the United States electorate access to free and unfettered voting in the 2012 elections via organized state action led by the Republican Party and their wealthy donors. In some states as many as 50,000 people who voted in the past may find it nearly impossible to vote in 2012.   According to New York University’s Brennan Center on Justice, “The states that have already cut back on voting rights will provide 171 electoral votes in 2012 – 63 percent of the 270 needed to win the presidency.”

Laws in several states, such as Arizona and Texas would even make it difficult for President Obama’s name to appear as a candidate on the ballot. This has arisen from false claims that he is not a U.S. Citizen.  While those claims are absurd on their face, some states are nonetheless passing laws that will make it very difficult for the President to satisfy all of the criteria required to be a candidate for president. One of those criteria is that Mr. Obama would have to present his original birth certificate, not a copy, in order for his name to appear on the ballot in that state. The President may have no original birth certificate; it is possible only copies exist. That is yet another way to attempt to rig the election.

PAST PATTERN OF VIOLATION OF VOTING RIGHTS:  Within the United States, a variety of techniques have been used in past elections to suppress voting by minority groups, college students, elderly and disabled voters, and it appears are being greatly expanded again for the 2012 Presidential and Congressional elections, including:

Creating Unrealistic Hurdles to Voter Registration:  In Florida, a new law is making its way through the legislature that would make it nearly impossible to conduct voter registration drives, which greatly affects voter registration in Hispanic, racial minority and other low income areas.

Voter Deception: Deceptive practices include misinforming voters about whether they can vote, where to vote, when to vote and how to vote. A Common Cause report on the 2008 election pointed out that these practices have expanded from flyers and phone calls to include online practices. From the report,

"Most of these emails said that given the high turnout expected, Republicans were to vote on Tuesday, Democrats on Wednesday. An email went to the entire student body of George Mason University that appeared to be from the provost of the school making this same claim.”

Partisan Election Administration: In many states, the officials responsible for overseeing elections are themselves partisan elected individuals, some of whom also hold positions of responsibility in the same campaigns they are charged with overseeing. This creates a natural conflict of interest. The most well-known instance of this is Florida Secretary of State Katherine Harris in the 2000 election, who was also co-chair of the Bush-Cheney campaign in Florida; she oversaw the removal of tens of thousands of names from the voter rolls based on admittedly-inaccurate lists, the vast majority of whom were minorities or from primarily Democratic precincts. Many Americans continue to believe George W. Bush was not legitimately elected president because of partisan interference with the electoral process in Florida.

Inequality in Election Day Resources:  By providing more polling places, poll workers and/or voting machines in some precincts than others election officials can create long lines that discourage people from voting, while making voting easy for others. In Ohio during the 2004 elections minority areas were provided with fewer resources than areas that tended to vote for conservatives, resulting in very long lines.

Felon Disenfranchisement , the policy of not allowing those with felony convictions to vote. The United States is one of the only democracies in the world with this system, and laws vary from state to state. It disproportionally affects African American men, with approximately 13% of the total population nationwide unable to vote, seven times the national average for other groups.

Voter Purges: Officials strike voters from the rolls through a process often shrouded in secrecy, prone to error, and vulnerable to manipulation.  Manipulation of the process can be a way to deny potential opposition voters access to the polls. Partisan election officials have been known to use the process to remove large numbers of targeted voters from districts that heavily represent the opposing party from the voter rolls.

SUMMARY:  The foregoing concerns are neither exaggerated nor hypothetical.  I, along with a great many other Americans, am deeply concerned at the prospect of serious nefarious interference with the electoral process in 2012.  While scrutiny by the U.S. Justice Department in overseeing the upcoming electoral process is urgently needed, it will likely be criticized by partisans as being politically biased, which will limit the ability of the Justice Department to do its job. Vigilance by non-partisan investigators and observers will be required to assure these types of anti-democratic manipulation do not occur. I am requesting that your office initiate the necessary steps to obtain assistance form the United Nations Department of Political Affairs and the support of the Carter Center in Atlanta, in monitoring the 2012 Congressional and Presidential Elections.

Thank you for your consideration.  I look forward to learning what steps will be followed to assure all of the citizens of the United States of America will have access to a fully free and fair election in 2012.