Nineteen years later, we still don’t know.

A reflection on what the autism community and the rest of humanity might have lost on that bright Tuesday morning.

September 11, 2020

On that Florida blue-sky morning nineteen years ago, I was researching autism online when my mother-in-law called me with the unthinkable news. Switching websites, I saw the still photos of the smoking, collapsing twin towers.

I packed up the baby and fetched our older two children from their school.

Panic struck me, knowing our country was under attack. After the horror of realizing thousands of people were dead, my thoughts wandered to the inevitable, ensuing war.

Those who died deserve to be remembered. In recounting what else we lost that day, I intend no offense or slight. I intend, instead, to bring our collective sacrifice into sharper focus.

This I knew, on that morning nineteen years ago: America was not going to let this attack go unanswered, and our answer would be exorbitantly expensive–in terms of dollars, lives, and opportunities lost.

Once again, all the progress in the world, including advances in medical science, would either decelerate or grind to a screeching halt.

***

Science takes a gut punch every time humanity’s collective resources are called to fight a war.

Following World War II, we forfeited, among other things, half a century’s progress in our understanding of autism.

Hans Asperger is credited with discovering “autistic psychopathy” in 1938 in Austria, before Leo Kanner’s famous 1943 paper on autism, says Herwig Czech, a researcher published in the journal, Molecular Autism.

Asperger was a Vienna pediatrician, whom Czech contends was a eugenicist and Nazi “accommodator.”

Asperger is better known, however, for identifying the syndrome that bears (or bore) his name, Asperger’s syndrome, a subtype or variation of autism. The eponymous disorder is thought to be a milder degree of autism.

Renowned expert Tony Atwood credits the Viennese doctor with identifying a handful of boys who exhibited a distinctive set of symptoms: “a lack of empathy, little ability to form friendships, one-sided conversations, intense absorption in a special interest, and clumsy movements.” (Click here for a link to Atwood’s book, Asperger’s Syndrome, A Guide for Parents and Professionals.)

Asperger’s work changed the way we think about what we now call “autism spectrum disorder.”

Too bad it took fifty years for his writings to come to light.

***

Asperger’s work was thought to be lost when the Allies bombed his clinic in 1944.

Dr. Lorna Wing revitalized the physician’s writings in 1991, and “Asperger’s syndrome” was adopted as a diagnostic term in the next catalog of mental disorders, the DSM IV, in 1994. (The DSM V subsumed Asperger’s syndrome into “autism spectrum disorder” in 2013.)

Perhaps it was the revolutionary nature of Asperger’s 50-year-old work, as relayed through Wing and Uta Frith, who translated his writings, which lent an air of heroism to the man.

Depictions of Asperger in the 1990s featured flattering characterizations. Writers insisted he advocated for children with disabilities, and tried to “save” them from Nazi euthanasia.

But Herwig Czech appears to have debunked the “savior” portrayal of Asperger. Czech found evidence Asperger referred disabled children to a clinic where he knew they would be killed by the Nazis.

My point is not to debate whether Asperger was a Nazi collaborator–it appears he was. Instead, my point is to illustrate how war derailed progress in the field of psychiatry for half a century.

***

Meanwhile, between World War II and Lorna Wing’s exhumation of Asperger’s work, parents and psychiatrists were left with a limited–and harmful–understanding of autism.

Bereft of Asperger’s contributions, leaders in the field went so far as to fault parents for the disorder. Bettleheim attributed autism in children to an uncaring, aloof attitude on the part of their parents. This notion became known as “the refrigerator mother” theory.

The lack of Asperger’s scientific insights caused other harm as well.

Atwood theorizes many children with milder, less disabling degrees of autism may have grown up with worsening maladaptive behaviors, leading to misdiagnoses of schizophrenia as they approached adulthood.

***

Wing brought Asperger’s work, and autism, out of the shadows.

Instead of damning children into a frightening, dim, and categorical prognosis, she reframed the disorder as a matter of degree, contending that there are individuals of all ages who fall somewhere along the “autism spectrum.”

As authors Francesca Happé and Simon Baron-Cohen report, thirty years of research since 1991 have proved Wing right.

So here we are, in 2020, enjoying the fruits of three decades of research from which we might have otherwise benefitted, sans Hitler, by 1970.

***

So yes, I remember and mourn the people we lost on that tragic Tuesday morning, nineteen years ago.

I was terrified that our country might be invaded. I remember fearing Jacksonville’s Navy bases might make for an attractive military target. I remember praying like crazy.

I’m grateful for the first responders in New York, for the unbelievably brave passengers who preemptively crashed their plane in rural Pennsylvania, sparing the terrorists’ targets in Washington, D.C. I’m thankful for those who answered the call to serve in our military.

But having witnessed the immense suffering of families who could not access the best science had to offer in understanding and treating their autistic children, I also remember cursing the upcoming war on terror.

***

We know the progress we lost between World War II and 1991 for one devastating medical condition, autism.

We’ll never know the medical innovations, art, literature or other contributions that didn’t come to fruition over the past nineteen years, as we waged the war on terror.

What if all our resources had been spent on addressing climate change, instead?

When, if ever, do we get to return to the business of advancing humankind?

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