Diagnosing Autism

“If you’ve met one person with autism, you’ve met one person with autism.” (Dr. Stephen Shore)

In the last years of my practice, I specialized in the diagnosis and treatment of autism. Of the many children brought to me for an evaluation only a small percentage were easily diagnosed.  The majority presented with some autistic-like findings but with other features that just did not fit the diagnosis. Rarely did I see a child present with the ‘full package’ of autism; language delays, social delays and rigid/repetitive behaviors. No two children I saw were ever alike. Each child came with a unique profile of strengths and challenges.

It was once hoped that scientists would discover a gene causing autism.  Instead, over 600 genes have been discovered that cause vulnerability to autism.  Furthermore, some of the same genes that cause vulnerability to autism also cause vulnerability to other neurodevelopmental conditions including, ADHD, language delays, fine motor delays, tic disorders and schizophrenia.  We now know that the genetics of autism is extraordinarily complex.

Add to this another layer of complexity, the new science of epigenetics.  Not only are there over 600 genes responsible for developmental vulnerability, there are hundreds of environmental influences that may turn on and off some of these genes.  It’s not only the genes that determine whether a child might develop autism.  It’s also the environment.

With all the combinations and permutations of over 600 genes, combined with countless environmental influences, it is understandable why each ‘autistic’ child is unique, one of a kind.  However, at times it was a challenge explaining this to parents who came to see me, just wanting a straightforward diagnosis.

‘Autism’ is no more than a label, which has served its purpose but, given current research, is becoming increasingly inadequate and anachronistic.  I predict that in the coming years, we will see the labels change, new diagnoses reflecting a more current level of knowledge.

Compared to when I started in practice, a great deal more is now known about autism and about genetics.  Sometimes, to know more is to find answers.  Sometimes, to know more is to realize how much more there is yet to discover and to understand.

Nature and Nurture

Back when I took Psychology 101, a much-discussed topic was the nature vs. nurture debate.  Theorists argued the extent to which development was influenced by genetic and biological factors (nature) versus the extent to which development was influenced by experience and education (nurture). Having watched my children grow, I am struck by the degree to which they are who they are by nature, less modified by nurture than I would have supposed.

From day one, my children came into the world different from one another.  Though offspring of the same parents, they had totally different temperaments and personalities.  One was by nature mellow, the other intense.  One wanted company, the other autonomy.  They slept differently.  On child you could kiss, hug or shake without disturbing sleep.  Touch the other child when sleeping, you’d get a swinging elbow and an accompanying groan of displeasure.

Emotionally, they were by nature different.  One was quick to show tears.  The other, unable to tolerate feeling sad, would instead get mad.  The discipline that worked for one was ineffective with the other.  Scold one and there were tears of remorse.  Scold the other and it was back-at-you.

Happily, both were funny and bright, but their styles of learning differed dramatically.  One was a sponge, eyes and ears open, information absorbed.  The other learned through active manipulation and mastery.  One child avoided any task that felt too hard, until age and development assured success, and then the task was quickly learned.  The other turned obstacles into challenges.  No problem was put aside until it was mastered.

Known to family therapists as “goodness of fit”, there are times when a child’s nature fits well with parental hopes and expectations.  There are times when it does not.  Sometimes there is a clash of child and parent temperament.  A quiet and cerebral child can be a difficult adjustment for parents who imagined a competitive and athletic child.  An active, exploring child can be a poor fit for parents more comfortable with quiet and order.  A strong-willed and independent child will struggle with parents who desire compliance and obedience.

It’s hard to nurture when natures clash.  Parents experience futility and disappointment when trying to make their child be who they are not.  There should be a parental version of the Hippocratic oath, “Above all else, do no harm.”  I would add to the oath a “lighten up” clause, a promise to maintain a sense of humor.

Through the years, my wife and I nurtured our children by providing a moral compass, discipline, and a safe environment in which to grow.  We have learned that by their nature, they are who they are.

I remember many years ago, when they were young.  One of my children, independent and creative, would not accept anything conventionally.  I tried to teach the rules for Go Fish.  Instead, my child insisted on inventing two alternative games, “Don’t Go Fish” and “Go Flush.”

My other child, social and good natured, came to me when learning the alphabet.  I was asked, “Daddy, what’s your favorite ‘F’ word?”  Unflappable psychiatrist that I was, I turned question into question.  “What’s your favorite ‘F’ word?”  “That’s easy . . .  Friend.”

Private Speech

“Thought is not merely expressed in words; it comes into existence through them.”   (Lev Vygotsky, 1896—1934)

I talk to others. I also talk to myself.  We all talk to ourselves. It is essential to thinking and reasoning that we do so.  This internal monologue, this “private speech,” mediates our attention, our learning, our behavior and our social interaction.  We use private speech to problem solve, to memorize, to categorize, to paraphrase, and to plan.

Much of what we know about the development of private speech, and the development of language in-general, comes from the research and theories of Lev Vygotsky.  Vygotsky was born in 1896 in Byelorussia to well-educated, middle-class Jewish parents.  Though formally educated in law, literature and philosophy, he taught and lectured in psychology. Despite suffering from tuberculosis, Vygotsky’s academic research and writings were prolific up until his death in 1934.  For many years thereafter, his work was largely unnoticed outside of the Soviet Union.  Only recently have his learning and language theories been widely studied, appreciated and applied.

Vygotsky recognized that language acquisition occurs best when a caring adult interacts with an inquiring child.  Optimally, language is learned in an interactive, language-rich environment, filled with stories, books and conversations.  Language is then rehearsed by the young child in the course of imaginary play, eventually becoming internalized as private speech.

Private speech is needed in order to interpret and store information in a meaningful way. Children with good private speech interpret silently what they hear and what they read.  They quietly paraphrase, and then can communicate the gist of what they have been asked to learn.  Children lacking a private voice cannot do so.

In the course of my career, I met many children who lacked use of private speech. Some of these children would problem solve, but their self-talk was out loud.  If asked by parents or teachers to be quiet, their problem solving ceased.  Other children I saw seemed not to use self-talk either silently our out loud. Often occurring with ADHD, these children faced significant academic, social and behavioral challenges. When spoken to, or when asked to read, they seemed unable to process information.  When questioned, they usually answered “I don’t know” or “I forget.”

Based on Vygotsky’s theories, I advised the parents of these children to create a language-rich environment at home in which private speech could yet develop. I suggested that parent and child read together, out loud.  I suggested stopping every so often to paraphrase and discuss what had been read. I advised parents to encourage their child to think out loud, this being a necessary step towards developing private speech. I stressed the importance of limiting electronics and engaging with one another daily in face-to-face conversations.

Unfortunately, children today spend less time interacting face-to-face with parents.  Children today spend less time in imaginary play.  There are less books being read, less stories being told and less conversations being had. Vygotsky understood the critical importance of parent-child interaction, the importance of adequate time for imaginary play and the importance of language acquisition, all essential for healthy development.  Vygotsky, long silenced and ignored, is now being clearly heard, informing us how children are supposed to learn.

The Answer to "Why?"

Many years ago, when my son was quite young, everything was, “Why?”.  I attempted to answer, but each answer was followed by another, “Why?”.  Finally, I found the answer that seemed to satisfy his curiosity.

“Daddy, why?”

“Jeffrey, economics.”

The Book of Job

“The problem of evil, the main obstacle to monotheism in the Judeo-Christian tradition, is the task of attempting to reconcile all the bad things that seem to occur in the world with the belief that God, an all-good, all-powerful, and all-loving deity, exists.”  (from Philosophy:  An Introduction Through Literature by Kleiman and Lewis, 1990)

As a Freshman in college I took Introduction to World Literature. One of the required readings was from the bible, the book of Job.  What followed was a reawakening of my then dormant religious curiosity.  From prior Sunday school experience, I had characterized the bible as a series of myths, fables and fairy tales, much of which stretched the limits of credulity.  But Job was different.  It offered no easy answers, no easy outs.  Instead, it posed difficult, seemingly unanswerable questions. As author William Safire (1929—2009) said, “I started my journey into this book with doubt in my faith and have come out with faith in my doubt."

Imagine the courage of those who many centuries ago chose to include Job in scripture.  They were unafraid to question belief.  They must have believed religion would inevitably be strengthened, not weakened, by wrestling with this troubling story.  The book of Job made it possible for me to question, to doubt, and once again bring religious study into my life.

God is the most problematic character in Job.  God is the magisterial creator whose works and whose ways exceed human understanding.  But God is also a god who treats human life as a toy and an experiment, a god that could as well be Zeus, the powerful, amoral, vain and all too human god of the Greeks. Psychoanalyst Carl Jung (1875—1961), wrote about Job, noting God’s duality.  “God is at odds with himself . . . He is total justice, and also its total opposite . . . (toward Job) God displays no compunction, remorse, or compassion, but only ruthlessness and brutality.”

I too wonder about God’s duality.  IF, as it says in Genesis, we are created in God’s image; and IF as rabbinic sages tell us, we are created with a dual nature, the inclination to do good and the inclination to do evil; then does it follow that God too must have a dual nature?

Job dares to demand from God an answer.  Unquestioning acceptance of his situation is intolerable.  He craves knowledge and seeks explanation.  Job, in his personal suffering, wants to know “Why?” God responds by challenging Job to look beyond self to a greater whole, a whole beyond human grasp.  Job’s appeal to God is answered magisterially but also evasively.  Nevertheless, in the end, Job is redeemed for having questioned.  He is rewarded for having sought an honest relationship with God.

The book of Job offers a response to blind faith, orthodoxy and fundamentalism.  Job’s three ‘consolers’ are the voices of dogma.  They speak the prevailing beliefs of their time. God reprimands them for giving Job conventional, pious, and ultimately errant responses regarding the cause of his suffering.  Maybe they were chastised for lecturing Job on God’s behalf when, as friends, they should have offered comfort.  Maybe their duty at that moment was not to God, but to their suffering fellowman.

The book of Job probes from many perspectives, often arguing back and forth within itself.  It offers no answers.  It refutes complacent self-assuredness.  Job, written in antiquity, speaks to modern man:

We must not accept blindly.

We must not preach literally.

There may be no answers.

It is every generation’s obligation to ask the questions.

Becoming Adult

One is not yet an adult when all that is right in life is a personal achievement,
but all that is wrong is another's fault.

One is not yet an adult who demands unconditional acceptance,
but commands change in others.

If one is ready to blame,
then one must also give credit and praise.

If one accepts credit,
then one must accept responsibility for fault.

If one demands acceptance,
one must be accepting of others.

If one commands change in others,
one must allow for change in self.

Chiggers

Yesterday, I forgot to use DEET.  Today, I’m paying the price. 

I grew up in Colorado.  Never heard of a chigger until I moved to Kansas and learned the hard way. Once, when covered in bites, I was inspired to write poetically about my experience. My first and only published poem can be found in the August 12^th, 1992 edition of The Manhattan Mercury.  With minor revisions. I bring you An Ode to Chiggers, by Gary Boxer.

Walking on a nature outing,

I knew not about little mites.

I wore shorts, no socks, just sandals.

Became host to small parasites.

Barely seen by the naked eye,

A pinhead’s size and no bigger.

I have a rash and itch like hell!

I curse upon little chiggers.

Red bugs, harvest mites, are names that mean chigger.

Their scientific family’s Trombiculidae*,

Of which there are maybe hundreds of species,

Thriving in Kansas heat and humidity.

A chigger is not an insect.

To spiders and ticks it‘s cousin.

Adults arise from winter’s sleep,

Covered with velvet red fuzz on.

From adults come eggs, then larvae.

Grasses and plants are home bases.

I walk, they jump on for a ride,

And crawl up to private places.

Injecting enzymes in dermis,

Invasive behavior indeed,

And from allergic reaction,

Comes protein ooze on which they feed.

I prefer a mosquito bite.

I react to them just barely.

The places they bite are smallish,

Itchy maybe, intimate rarely.

A local chigger is but a nuisance.

Entomologists just take or leave her.

But beware the Oriental chigger,

They carry Tsutsugamushi fever.

As I write this blog it is meant to be

About thoughts in my head that are hatching.

But it’s hard to write intelligently,

While I’m sitting here itching and scratching.

Revenge on chiggers my mission in life,

I bought Diazinon insecticide.

Attach to the hose, spray the grass amply,

The problem can forthwith be rectified.

I fear my meter and rhyme are uneven.

My poetic talent is nothing to tout.

Try hard as I may to rewrite lines smoothly,

I put bugs in, but I can’t get the bugs out.

Thinking and rhyming on Kansas fauna,

I’ll write about more pests that invade us.

Perhaps a future blog will be about

Noisy but innocuous Cicadas.

The point of this is trivial, I know,

As I try to sum up didactically.

But unlike most blogs that I have written,

Here’s advice to be applied practically.

When walking in Kansas summer it’s best

To wear stockings, long pants and use bug spray.

Wading amid the tall prairie grasses

Chiggers are predators and you’re their prey.

Now as I bring this ode to conclusion,

One last thing about chigger venomy,

Knowing firsthand discomfort it causes,

I don’t wish it on my worst enemy.

*some sources suggest the family Trombididae