Diagnosis

Last year Adrian read Andrew Solomon’s Far From the Tree: Parents, Children, and the Search for Identity, a book about children who are profoundly “different” from their parents. Solomon profiles families affected by mental illness, Down syndrome, deafness, dwarfism, gender identity, autism, along with parents whose children were conceived in rape or grew up to commit mass murder.

Andrew Solomon also has an article titled “The Reckoning” in this week’s New Yorker, based on interviews he conducted with Peter Lanza, the estranged father of Adam Lanza.

Adam Lanza was the 20-year-old man who, on 14 December 2012, killed his mother, then 20 young children and six teachers at Sandy Hook Elementary School in Newtown, Connecticut, and then himself. I blogged here about the fact that Adam was diagnosed with Asperger’s Syndrome.

On NPR’s Fresh Air program this week, host Terry Gross interviewed Andrew Solomon about “The Reckoning.” Solomon made a point that also appears in the article, a point about diagnosis: According to Peter Lanza, receiving a diagnosis—Asperger’s Syndrome, now regarded as high-functioning autism—enabled him and his ex-wife, Nancy (Adam’s mother), to ignore signs of more troubling developments in their son. As Adam became isolated, and prone to obsessive-compulsive behaviors, and fascinated with violence, including violence against children, his parents attributed the oddities to Asperger’s. Adam has Asperger’s Syndrome, they thought. Asperger’s makes him behave strangely.

I didn’t think, in the weeks after 14 December 2012, and I don’t think now, that Adam Lanza’s parents were culpable in what happened at Sandy Hook. That’s a ridiculous notion. They talked. They tried. They sought the advice of specialists. Nancy Lanza appeared to believe, genuinely, that coddling Adam and his increasingly disturbing whims was the best means of supporting her son. The burden we place on parents today is too great even without attributing to them their children’s reprehensible violence.

Without in any way blaming Peter or Nancy Lanza, I appreciate Peter Lanza’s recognition (and Andrew Solomon’s explanation) that a diagnosis is broad and easy to hide behind.

To that substantive point, I will add one more: A diagnosis of autism, while it may be comforting, is largely meaningless.

Martin does not “have autism.” Martin has a variety of conditions, linked by autoimmune disorder, that result in symptoms labeled as autism.

It is minimally probative when doctors label symptoms as disease. Suppose that a man goes to the doctor and is diagnosed with “wheezing.” Suppose that the doctor tells this man that many helpful therapies exist to alleviate wheezing, including throat lozenges, tea with honey, breathing exercises, and even CPAP masks. Suppose the doctor suggests that the man eliminate smoking from his routine, because smoking is known to exacerbate wheezing. Suppose the doctor goes so far as to prescribe a drug that relaxes the airwaves, so that the man can walk about with his wheezing less evident.

Would you think the doctor had been thorough? That he had done his job?

Or would you fault the doctor for addressing the symptoms but failing to diagnose lung cancer, the disease that caused the wheezing?

When Martin was diagnosed with PDD-NOS, and then with autism, I cried. A lot. Even Adrian cried. Autism is treated like a death sentence. Parents are coached to grieve for the child who once was but will not be again.

I wonder now what the days surrounding Martin’s diagnosis would have been like if the team of “experts” we paid had said something like this:

Your son has a complicated autoimmune disorder. His gut, where most of the immune system subsists, doesn’t have the right balance of beneficial flora, and therefore he can’t digest nutrients properly or respond to intruders like parasites, harmful germs, unchecked proprionic acid. On a related note, your son has a mitochondrial processing disorder, which is causing low muscle tone and lethargy. Several genetic abnormalities are contributing to the injuries. The totality of these disorders is resulting in systemic inflammation as a subpar immune response, and that inflammation, which persists even in the brain, is causing “misfires” within the neural synapses. These misfires result in the symptoms you’re witnessing: repetitive behaviors, lack of eye contact, social awkwardness, inattention, drifting, and speech skills that lag behind your son’s cognitive ability.

I imagine that, if three years ago we had been told all that, we would have cried less and got to work sooner. We would have asked questions like how to re-balance the gut flora, how to resolve the mitochondrial processing failures, and whether the genetic abnormalities can be addressed.

(We might also have asked how this autoimmune disorder arose, and whether it had anything to do with the hospital threatening us, placing our healthy son in the NICU, and pumping him full of antibiotics, after the unplanned C-section robbed him of the protective effects of his mother’s vaginal microbes. That’s a topic for another post.)

I won’t deny that I take comfort in the existence of an “autism community.” (Solomon makes the point that Adam Lanza rejected his Asperger’s diagnosis, and refused to consider himself part of the Asperger’s community.) I do, however, argue that the autism diagnosis is an impediment to recovery. “Autism” sounds impossibly untreatable. The health conditions underlying autism? Not so untreatable. Those we can roll up our sleeves and tackle.

Andrew Solomon, who is public about his own battle with depression, lamented in the Fresh Air interview that Adam Lanza’s depression might have been treatable, had it been recognized as depression instead of hidden within Asperger’s. I ask: Would the depression have been hidden if Adam’s parents had realized that Asperger’s Syndrome is a symptom of an underlying condition? Or might they have suspected that the depression arose, in whatever measure, from the same underlying condition? Might they have had the tools to roll up their sleeves with more success?

Adrian reports that he found Far From the Tree (emotionally) difficult. He put it down for a while after reading that courts tend to issue mild sentences for parents who kill their special-needs children. Some forms of filicide, it appears, are considered forgivable. Would the filicide be so forgivable if those parents had children with diabetes or leukemia or renal failure or any other condition that, with medical and dietary and lifestyle attention, might be kept at bay?

Autism is the symptoms of a treatable medical problem. Diagnosis matters.

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s