“What’s in a name? That which we call a rose by any other name
would smell as sweet.”
– William Shakespeare
“Medicine gives a Latin name or a person’s name to any disease
we don’t understand or can’t cure.”
What IS in a name?
Can be a lot. The most recent classification of diagnoses that physicians can bill for and that the insurance companies will pay for has deleted the “name” Asperger’s Syndrome. Children with Asperger’s syndrome are now lumped into the new diagnostic category of Autism Spectrum Disorder (ASD).
Parents of Asperger children could lose insurance benefits now tied to that diagnosis. Grant-supported educational and enrichment programs for Asperger’s may dry up. Asperger’s has always been a less terrifying diagnosis than autism. People with Asperger’s, and probably more important, their parents, don’t want to be labeled with the stigmata of “autistic”.
In the 1940s Dr. Asperger and Dr. Kanner separately described a clinical syndrome characterized by inability to interact with others. absent speech, and poor physical coordination. They both called it autism. Both were Austrian, but Kanner had emigrated to Baltimore and his work helped popularized the term. Dr. Asperger’s autism became known by his name because many of his patients were so-called “higher-functioning autistic”. They might lack empathy, be clumsy, and have unusual behavior, but were often verbally competent and even superior in non-verbal areas.
As both terms became more widespread in the 1990’s, other names like Pervasive Development Delay (PDD) were applied to some children who were not “quite autistic”. Oliver Sacks, MD in his book, An Anthropologist On Mars, gives detailed descriptions of his own 1990‘s world-wide travels in search of a personal understanding of savants, prodigies, and autism.
It is not an urban myth that Asperger’s patients have graduated from MIT. Dan Akroyd and Daryl Hannah have just self-proclaimed their Asperger’s. Richard Branson, founder of Virgin Airlines, and about 499 other companies, has been called an Asperger though he is probably “just” a severe dyslexic. (Oops, another diagnosis to be distinguished from autism).
Confusion about these syndromes increased in the 2000’s as screening tools improved and awareness of the syndromes grew. The authors of the 2013 Diagnostic and Statistical Manual of Mental Disorders (DSM-5) , the bible of insurance company reimbursement, attempted to simplify and clarify the situation by lumping all the diagnostic names into one billing code, “Autism Spectrum Disorder” (ASD).
The attempt has not succeeded according to its critics and many practicing physicians. For example, one pediatric practice had trouble coining a name for its new support group for parents of autism spectrum disorder children. “ASD” was already understood as “atrial septum defect”, and nobody wanted to fool with those cardiologists. After much discussion they decided to call it a “NOS group”. “NOS” stands for “Not Otherwise Specified”, a reimbursable billing code that physicians submit to insurance companies as a last-resort diagnosis when what the patient has doesn’t fit into any other category. Hopefully such a support group would have room for the parents of both Rain Man and Susan Boyle, of “Britain’s Got Talent” and YouTube fame.
The number of diagnostic names for autistic children is clearly surpassed by the number of its suggested treatments.
Maybe they just need a little loving…or at least some oxytocin
Oxytocin is considered the “love hormone”. Raising its blood levels makes people more sociable, even more affectionate. At Yale, researchers squirted oxytocin mist into the noses of 17 autistic spectrum children and watched the “social part” of their brains light up on functional MRI when they looked at pictures of people’s eyes. The social part of the brain did NOT light up when they looked at a picture of a truck. It is a l-o-n-g way from lighting up part of a brain to actually changing behavior, so researchers are cautious about applying their results, but this story is all over the ASD websites and in the popular press.
Maybe the right germs can help
Researchers recently reduced “autistic behaviors” in mice with “leaky guts” by feeding them some bacteria found in a healthy human gut. This significantly reduced the mice’s “autism-like” behaviors as well as the leakiness of their intestines. “The research adds to growing evidence of a gut-brain connection in autism spectrum disorder (ASD)”. This, of course, leads to speculation about the potential role of probiotics in the treatment of autism. Another study suggests that instilling parasitic worm eggs into the gut to change the flora and mimic inflammation might help!
Current Bottom Line
We do know that early intervention with appropriate remedial educational and behavior modification techniques helps ASD children to successfully function, so we have lots to do while these far-out experimental treatments get evaluated.
1. Olivier Sacks, MD, An Anthropologist on Mars: Seven Paradoxical Tales, 1995, chapter on Prodigies