Asperger’s Lumped In With Autism Diagnoses: What Will It Mean for Resources?

Posted on December 4, 2012


In a controversial move, the American Psychiatric Association board of trustees voted to eliminate Asperger’s Syndrome as a separate diagnosis, essentially rolling it up along with several other disorders under “Autism Spectrum Disorder.”  The change will go into effect when the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) is issued next spring.  According to the Association,

The proposal asserts that symptoms of these four disorders represent a continuum from mild to severe, rather than a simple yes or no diagnosis to a specific disorder. The proposed diagnostic criteria for autism spectrum disorder specify a range of severity as well as describe the individual’s overall developmental status–in social communication and other relevant cognitive and motor behaviors.  Dr. James Scully, Medical Director of the American Psychiatric Association said, “The proposed criteria will lead to more accurate diagnosis and will help physicians and therapists design better treatment interventions for children who suffer from autism spectrum disorder.”

It has been pointed out that the DSM “Bible” has a big impact on who gets services and who does not,  and this has a lot of current patients and families worried.  Losing one’s diagnosis means losing coverage for, say, behavioral therapy, so the very arbitrary placement of the dividing line between pathological and merely quirky has some very real con$equence$.

The Association and other experts have expressed confidence that those who have a diagnosis now will still have a diagnosis and access to resources following publication of the DSM-5, because clinicians will still have significant latitude in working with their patients.  But it’s not the clinicians who hold the purse-strings on certain programs or pools of funds.  If “Autism Spectrum Disorder” has only so many dollars, doctors, or programs allocated to it… in this age of skyrocketing health-care costs, doctor shortages, budget cuts and fiscal cliffs, mind… and suddenly several other populations swell its ranks, well, my math skills are a bit fuzzy, but it seems like there will be fewer resources to go around.  It may well come down to a choice between cutting out those who are least in need to conserve services for those most in need; or cutting some services at all levels of need, thinning the soup to try to accommodate everyone.

If it comes to that, I have to ask:  why should the merely odd, awkward, nerdy or unhappy take resources from the same pool as those who are profoundly affected, and truly dependent on others?  I would argue that, like anything else, services should be prioritized for those who are truly in need, and I’m not convinced that Asperger’s (or very mild, or high-functioning autism) really meets that threshold of need.

As the name suggests, Autism Spectrum Disorder is a continuum.  So where does one draw a line in a continuum?  What’s the breaking point between awkward and pathological?  At what point can a condition be said to impinge on one’s daily life?  When you don’t get your co-workers’ jokes?  When you don’t get the job you wanted?  When your love life is nonexistent?  When your socks never seem to match?  Will therapy really help any of this?  Should we be committing scarce resources to people who are pretty darn nerdy… perhaps even more than nerdy…  but able to live independently?

You may think I am being flippant.  I am not.  I have a profoundly autistic cousin, seriously “Rain Man” material.  He is brilliant, absolute genius, in several very limited ways.  He is very sharp in some other ways.  He has benefited from occupational therapy and special education.  He has a job – at a school for other sufferers of autism.  But in some very basic, essential ways, in those things that are totally obvious to the rest of us, he is utterly clueless and always will be.  He will never live on his own, and he will never have a job in a mainstream environment.  The family prays that his siblings will always be there for him.

Wherever that arbitrary line is drawn in Autism Spectrum Disorder, my cousin will always fall deep within the pathological range.  He is truly dependent on others.  That tends to color my view just a bit, concerning folks who are perhaps outside the arbitrarily defined confines of “normal,” yet fully capable of living on their own, absorbing a cut of the limited assistance available to the autistic.

It remains to be seen how the new diagnostic criteria will translate into practical applications for real people, but I certainly hope that taking the “continuum” into account means that those who are most in need will be the higher priority for resources.