Pharmacology

Here is a list of medications commonly used in the treatment of autism: Prozac, Risperdal, Adderall, Depakote, Zoloft, Tegretol, Mellaril, Lithobid, Wellbutrin, Haldol, Zyprexa, Anafranil, Ritalin.

But exactly what problem are we solving here?

If I were to say I was interested in playing sports, and then donned all at once a goalie mask, sweat pants, shin pads, boxing glove, wrist band, snow skis, shoulder pads, racing silks, swim goggles and a catcher’s mitt, would you not think I had gone slightly mad? At the very least, would you not think I had misunderstood the phrase “playing sports”?

There is no “treatment of autism” in that list of drugs. And yes, we have gone slightly mad.

The Two-thirds Rule

I am hesitant to put forth the two-thirds rule, because it is indeed the roughest of rules of thumb. But having found it helpful so far in my own parenting experience, and believing it might be of service to at least a few others, I offer it here along with Thoreau’s gentle admonition—that none stretch the seams in putting it on.

The two-thirds rule says that in development and maturation, particularly in those areas relating to acquisition of social and biological skills, autistic individuals will on average proceed at roughly two-thirds the pace of their non-autistic peers. Some autistics will be speedier, of course; others will march to a yet more measured beat. But as expectation, as seat-of-the-pants measuring, two-thirds would appear to be a reasonable guide.

Examples of the rule’s application might include:

• Toilet training—accomplished around three years of age in most, but more often hurdled near the age of five or six by many autistic individuals.
• Basic social language (spoken, gestured or typed)—shoots forward like a meteoric star in most children between the ages of two and five, but is acquired more deliberately by autistic children closer to the ages of four to eight.
• Sexuality (with all its unwritten rules)—of sudden and critical importance to many individuals in their early teens, but more safely, effectively and willingly explored by autistic individuals much nearer to their late teens.
• The final rites of passage into adulthood (graduation, job, marriage, children)—often approached impatiently as early as the age of sixteen by many, and yet for autistic individuals, it seems the majority are just not ready for such endeavors, even by the age of twenty-one (which might explain why so many can be found hiding out in graduate school, or in a parent’s spare room); and when we speak of full adult maturation in the autistic population, we are probably speaking mid to late twenties, maybe even later.

The above examples notwithstanding, the two-thirds rule is not intended as a tool for comparison; it is intended primarily as a means for enhancing understanding, and as an encouragement towards a more liberal use of patience and time. There is no shame to be associated with proceeding at a two-thirds rate, or at any rate indeed. Maturation is not a race. The quality of the finished product stands as far more decisive than the speed at which any development is obtained. Plus let’s not forget that autistic individuals receive significant compensation for their relative sluggishness in the social and biological spheres. Outside these domains, and particularly in areas of special interests, autistics will often quickly surpass their non-autistic peers (and in some cases, will manage to transcend). And one further thing I have noticed: upon reaching adulthood—at whatever calendar age that may be—autistic individuals often feel no urge to pause. Having battled this maturity battle for so long, perhaps they find it only natural to keep right on going, whereas with many non-autistic individuals I know, they seem particularly vulnerable to getting stuck near the developmental age of seventeen, the remainder of their biological time played out as little more than a reminiscence of glory days.

For autistic individuals, the glory days always seem to be the ones still ahead.

The Bracing Mountain Air

What a manic episode was Zarathustra. Just think, with some lithium or valproate, Friedrich could have remained calm for that week and a half.

Echolalia

Echolalia, an early warning sign of …

I can almost hear a savannah-bound animal through the not-so-distant murmur of time, but the static has grown unusually thick today and has taken on a strange and hypnotic form: chants of war, rosary prayers begging for peace, tragedy and comedy built around chorus and refrain, the watchmen crying their cycling hours, tribal histories passed down as sung recipe, the recitation of poetry with its beguiling trick of rhyme, and finally those incessant, relentless demands for justice—the repeated rhetorical rapture of “I have a dream ….”

Echolalia, an early warning sign of … a language disability?

Justice Is Served

There once was a lawyer named Cliffy;
Tried deposing smart Kate in a jiffy.
At Ms. Seidel’s request
The court quashed that behest,
And quished back up his ass his rank whiffy.

The Purpose-Driven Life

Although not as often now as when I was young,
It still happens upon this planet’s burning surface
A child will spot a model on the toy store shelf
And turn instantly beguiled.
Space shuttle, Eiffel Tower, late-model car,
Three-masted ship—it matters not,
The glossy image on the box beckons
With hue, decal and precision.
The child is cast as a willing slave,
A slave to construction’s glory.

Perhaps blessed with parents possessing eyes
For budding wonderment, perhaps
Resourceful enough to tug on a reluctant sleeve,
Our child gets his wish fulfilled,
And on the ride home even the road squirms
With anticipation: piece fitting cleanly to piece,
Red enamel coating with audacious warmth,
The finished product speeding at speeds,
Scaling at heights heretofore unknown
Inside playroom walls.

With shrink-wrap ripped and flaps torn to reveal contents,
His enthusiasm might still be rising …
But the pieces indeed are many.
Glue. There is never enough glue,
And then there is way too much glue.
Instructions first set aside as slighting insults
Now mock as hieroglyph from the bedroom floor.
Nothing fits to fit, paint smears and never where intended to smear,
And Dad is none too happy about what has happened to the rug.
One day, perhaps two days, certainly no more than a week,
His hollow feelings unrelieved this child begins to wonder
If the dream was worth a dream. The tragedy is,
He does not yet know the depths of his own despair,
For this is after all only a model, with a scale of one to infinity.

The purpose-driven life overwhelms us with detail and size,
Each goal seemingly checked by circumstance,
All steps unveiling a wider vision of the massive structure
Yet to build. Pieces fill a range from quark to cosmos,
Construction lasts from bang to farthest light-year reach.
How to comfort a child with lessons of effort and patience
When we stand so dumbstruck and numb ourselves?
The ancients always warned us, God is surely boundless—
Now we know, they were not kidding.

Ockham’s Razor

This:

Autistic disorder, Asperger syndrome, childhood schizophrenia, pervasive developmental disorder, classic autism, high-functioning autism, low-functioning autism, bipolar disorder, non-verbal learning disability, savant syndrome, regressive autism, passing for normal, mistakenly diagnosed.

Or this:

One cognitive phenomenon—with outcomes ranging from tragic to sublime.

The Certainty March

Of course left-handedness must be cured—it is the mark of the Devil!

Of course homosexuality must be cured—it is an abomination to God!

Of course autism must be cured—it is a kidnapping of the soul!

Lining Up Toys

Lining up toys, an early warning sign of …

I can almost see a savannah-bound animal through the not-so-distant mist of time, but the fog has turned unusually dense today and has taken on a strange and net-like form: endless beads tied upon strings, countless wheat planted row next to row, road and track and wire gridded for mile and mile and mile, city block connected to city block, house abutting house, millions of books arranged on shelves (and in each book, letter attached to letter, line upon line upon line), assembly plants running straight as an arrow from entry door to exit, and people queued up everywhere to acquire item after item after item.

Lining up toys, an early warning sign of … a disorder?

The Autism Knowledge Revolution

Harold Doherty writes frequently about a theme he calls the Autism Knowledge Revolution. This is the appellation Mr. Doherty has given to a cavalcade of promising recent developments in the fields of autism research, and it gives expression to his resulting optimism that humanity is now on the verge of transforming the miseries of autism into but a distant memory. Examples of such near breakthroughs would include the unraveling of the mysteries of FMR1 and FMR4, the discovery of de novo gene mutations at chromosome 16p11.2, the profiling of environmental autoimmune triggers, and the surprising efficacy of high fevers. And if these accomplishments were not heartening enough, the list of projects being funded by Autism Speaks provides still more reason to keep good cheer, research hot on the trail of dysfunctional cortical connectivity, maternal antigen exposure, and the ever helpful mouse model of neuronal TSC inactivation—all touted as the next big step in the development of new drugs, interventive therapies and other alleviating treatments.

But really now—what are we to think of all these promising new developments, this abundance of imminent breakthrough?

Imagine I have sent a group of teenagers to watch a hockey game, and have asked each one the following morning what was the score. What am I to think if back to me comes the following set of replies:

“4 to 2.”

“6 to 1.”

“0 to 0. No, it was 10 to 7.”

“They called it off after the third fight.”

“4 to 3 in a shootout.”

“I think that Zam-bussie thing won.”

“Overtime. 5 to 3.”

Here is what I would think: I would think those kids went nowhere near that hockey game.

Invoice

In “The Costs of Autism,” Professor Michael Ganz estimates the burden of autism on the United States economy to be around $35 billion per year.

But of course with both a reported epidemic and inflation running amok, surely it would not be asking too much to double this amount, in order to keep the number somewhat up to date. And furthermore, the U.S. is just one country—a populous and expensive country, it is true, but just one country nonetheless—and thus we will not be stretching the figure too greatly to apply an additional factor of ten when arriving at a more worldly estimate. And finally, as my own personal touch—for rounding sake, if nothing else—let’s nudge the total to a full one trillion dollars per year; for when it comes to this side of the balance sheet, I think it only prudent we not appear too stingy.

Then let’s consider a simple list of individuals—a partial list, it is true, but on this side of the balance sheet there is no need to be too greedy: Newton, Socrates, Darwin, Michelangelo, Luther, Archimedes, Van Gogh, Dostoyevsky, Kierkegaard, Beethoven, Einstein, Turing. It has been well documented the amount of compensation these individuals received for their various efforts, an amount generally understood to be quite modest.

So if we are going to insist on a settling of accounts, and the agreement is that the autistic burden runs to a full one trillion dollars per year, then I think an obvious question still remains: when does the autistic population receive the remainder of what is due?

The Pace of Progress

The opening paragraph of Thoreau’s Civil Disobedience goes like this:

I heartily accept the motto, — "That government is best which governs least"; and I should like to see it acted up to more rapidly and systematically. Carried out, it finally amounts to this, which also I believe, — "That government is best which governs not at all"; and when men are prepared for it, that will be the kind of government which they will have. Government is at best but an expedient; but most governments are usually, and all governments are sometimes, inexpedient. The objections which have been brought against a standing army, and they are many and weighty, and deserve to prevail, may also at last be brought against a standing government. The standing army is only an arm of the standing government. The government itself, which is only the mode which the people have chosen to execute their will, is equally liable to be abused and perverted before the people can act through it. Witness the present Mexican war, the work of comparatively a few individuals using the standing government as their tool; for, in the outset, the people would not have consented to this measure.

Much has changed in my native country since those words were penned—the word “Mexican” needs to be replaced.

Kirby and Olmsted

Imagine a professional basketball team that has been lousy for quite some time (think the Knicks). It is late in the third quarter of yet another miserable game—they are getting trounced, 78–46. But just before the buzzer, their point guard makes a spin move to free himself, launches a three-pointer, and … swish, knocks it home. As the players walk to their benches, the opposing coach gives the guard a long stare, and at last finally nods, “Nice shot.”

All of a sudden David Kirby and Dan Olmsted come running out of the stands. They construct a massive podium at center court, unfurl gaudy streamers from the highest rafters, switch the spotlights to their loudest beam. After gathering up every reporter, celebrity and dogcatcher they can possibly find, they instruct the point guard to take center stage and recall in excruciating detail that fateful and decisive moment, the earth-shattering occasion when the opposing coach finally admitted, “Nice shot.” And with an awkwardness only they can muster, each now grabs the microphone for himself and shouts with fire alarm glee, “See, that proves it—we were right all along. This is the greatest basketball team that ever lived!”

I hope Kirby and Olmsted are not forgotten. I hope they receive all the undying attention they seem to so desperately crave. Most bad journalists simply fade into obscurity, but how much better if they were made into bright and shining examples—like flaming skulls on a wooden stake. When they build the Woodward and Bernstein Wannabes Hall of Fame, I nominate Kirby and Olmsted inductees number one and number two.

How Traditional Speech Therapy Can Help the Autistic Child

When my autistic son was not quite four years old, he began weekly speech therapy—an hour each Wednesday afternoon. Often I would pick him up from these appointments and thus I would get to hear the report of how well, or how poorly, the session had gone. Maybe it was my imagination, but I swear that report sounded exactly the same from week to week. The therapist would begin by showing me the same three-ring binder, the tool of her trade, the one stuffed with page after faded page of cartoon-rendered social scenes. From what I could gather, Brian was being made to sit at a table the entire time and listen as the therapist narrated each scenario in increasing detail. Then he would be scored on how well he answered the questions about what he had seen and heard—good points for answers with words, less for gestures, and of course zero points for silence or an inappropriate response. “I couldn’t seem to get his attention today,” she would finally say. “He kept getting distracted by the fan.”

It was summertime when Brian took those sessions, and the therapy office was part of a sprawling complex that of course needed to be cooled; so upon walking out the door an inevitable question would always arise at my side. “Go see air conditioners?”

“Sure, Brian, we can go see air conditioners.”

And off he would careen, steering his first uneasy path to that first buzzing box, and he would approach all these metallic idols with the same intense corner-eyed stare, the tight clasping of hands in front of face, and that scrunching of shoulders back and forth. “Lift you up?” he would ask in front of each one, and I would lift him up to verify the status of the spinning or not yet spinning blades: “It is on, it is off,” he would pronounce with such simple solemnity. And then the counting of air conditioners in each row, and also the litany of all the colors, and finally the pleading near the end to go see at least one more—a full half hour deluge from a chattering autistic storm.

That is how traditional speech therapy can help the autistic child.

Autistics Think Differently Than Non-autistics — Dramatically So

The Level and Nature of Autistic Intelligence (Dawson, Soulières, Gernsbacher, and Mottron, 2007) is a simple report—so simple its gist can be gleaned from just one of its pictures, that of Figure 3. But oh my, what a shattering image that is!

Think of Alzheimer’s versus control. Think of mercury poisoning versus control. Can we not surmise the same garden-variety distribution, only drifted farther down the diagonal? Autistics shock us not only with their northwesterly cluster—stunning enough as that is—but also in their clinging to the edges of the graph, like prisoners longing to escape the yard.

Modern Science

The Level and Nature of Autistic Intelligence (Dawson, Soulières, Gernsbacher, and Mottron, 2007) is a simple report—so simple it leaves one scratching one’s head as to why it would require four authors and a list of references nearly as lengthy as the report itself.

In 1905, a young patent office clerk submitted a straightforward essay—On the Electrodynamics of Moving Bodies. Apparently oblivious as to how these things are done, he failed to enlist the services of recognized co-authors, and forgot to include a pile of citations from the leading scientific personalities of his time. I can only assume it was the most egregious of editorial board snafus that allowed that clerk's essay to see the light of day.

The First Step Is the One That Altogether Escapes Notice

It must have seemed an obvious choice—not even much of a choice really—to take autism as the sign of something gone horribly wrong. There was the example of schizophrenia after all helping to lay the groundwork, and now the unveiling of all these disconnected children, so clearly different and apparently destroyed.

We have been traversing autism’s geography for more than sixty years now and have visited a veritable tour’s delight of promised lands: Refrigerator Mother Mountain, Blind Mind Alley, Genome Dome, and the Swamp of a Thousand Toxins. Having traveled for so long and having charted a course so wide, surely our much scribbled-upon maps must now be showing great progress.

Except, of course, that first step was in the wrong direction.