Thursday, April 5, 2012

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 for $10-12.

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