How a Diagnosis Can Both Help and Hurt

Looking back again at my post last week on prenatal screening for disabilities, I was arguing that many diagnoses (including my own bone disorder) have inherent qualities that cause suffering; that is, I believe that the suffering of disabilities does not stem solely from social exclusion, lack of accommodation, and cultural tendencies to see people with disabilities as “less than” people without disabilities. However, I also wrote:

It may very well be that certain diagnoses that we currently perceive as disabling really aren’t disabling once we remove social and cultural barriers and prejudices.

I had two specific disorders in mind when I wrote that: Down syndrome, and high-functioning autism disorders, such as Asperger’s syndrome. Because kids diagnosed with Down syndrome today routinely receive early intervention and special education services in mainstream schools, the average IQ of people with Down syndrome is actually increasing. Parents routinely report that their kids with Down syndrome are happy, loving, and valued members of their families and communities. Down syndrome is frequently not nearly as “disabling” as it once was, when kids get the help they need, and the perception of Down syndrome as a dire diagnosis—a perception that leads about 90 percent of parents whose child is prenatally diagnosed with this condition to choose termination—may be misguided.

As for Asperger’s, one can argue that this is not so much a disorder as a different way of interacting with the world—a way that actually carries many benefits. People with Asperger’s focus on topics obsessively, which makes them well-qualified for detail-oriented work requiring people to know a whole lot about fairly narrow topics, in areas such as science or computers. (I wonder how many people with Asperger’s pursue Ph.Ds. It seems a perfect match for their gifts—an opportunity to research a narrow topic in depth, and then talk about it at length before a dissertation committee.)

So are children (and adults) diagnosed with Asperger’s being unfairly labeled as having a disability, when in fact they just have an unusual, but perfectly functional, way of interacting with the world?

In a New York Times op ed, psychiatrist Paul Stein wonders if the increasing diagnoses of Asperger’s syndrome are an unfortunate side effect of a “tide of ever more pathologizing.” He argues that, because people with Asperger’s don’t have language acquisition deficits typical of other types of autism, perhaps it should be categorized as a social disorder rather than an autism-spectrum disorder. Stein writes, “Social disabilities are not at all trivial, but they become cheapened by the ubiquity of the Asperger diagnosis, and they become miscast when put in the autism spectrum.”

To me, this conversation raises a core tension in how we, as individuals, as people of faith, and as a culture, perceive disabilities and those diagnosed with disorders of various types. On one hand, getting a clear diagnosis of something like Asperger’s can be a relief to parents (and in the case of older children and adults, to the person diagnosed). Once we have a label for what’s going on, not only can we understand it better, but we can connect with others living with that diagnosis, and access services (early intervention, special education, various therapies) that require a concrete diagnosis for access. (My fellow Patheos blogger, Christian Piatt, wrote yesterday about his son’s reaction to the new understanding that his obsessive interests and frustration with his peers stem from a diagnosis of Asperger’s syndrome.)

On the other hand, a diagnosis, particularly when it is made on a purely clinical basis—that is, when the diagnosis is made based on observable symptoms, but cannot be verified by any kind of diagnostic test—can potentially pathologize characteristics that might be better perceived as part of the normal range of human behaviors, traits, and capabilities.

Autism exemplifies this tension well. Autism-spectrum diagnoses have exploded in recent years, and some of that increase is due to increased awareness of disorders such as Asperger’s. In previous generations, someone with Asperger’s would not have received a diagnosis at all, but would have been perceived as “quirky.”*

Does Asperger’s belong on the autism spectrum? Does increasing diagnosis help or hurt those living with such conditions? Does the increased self-understanding and access to help that come with a diagnosis outweigh the potential for others to perceive people with certain diagnoses as disabled, sick, or “less than”?

I’m not even going to venture an opinion. I can see both sides. And of course, if we, as individuals and as a culture, valued everyone no matter what their physical and psychological traits, we wouldn’t have to worry about how a diagnosis might become a label that tempts others to write people off as burdensome or less valuable than their peers.

*I have actually wondered about whether my children have some kind of Asperger-like “thing” going on. All of my children, particularly the oldest and the youngest, are very bright and prone to honing in on particular topics obsessively. My oldest daughter, like her father (ahem), tends to go into “lecture mode.” They will both go on and on about something that is fascinating to them, having no clue that their listeners’ eyes glazed over about 15 minutes ago. (My husband knows that I have noted this quality about him, but doesn’t seem to take my observation personally given that I still enjoy his company very much.) All three of my children “stim” (jargon for the self-stimulating repetitive physical behaviors common in children with autism-spectrum disorders). The arm flapping and hand rubbing in this household can be completely overwhelming; I have to firmly tamp down my impulse to scream, “Will you all please stop moving so gosh darn much?” or to grab their hands to just Make. Them. STOP. My oldest daughter no longer flaps, though she did quite a lot as an infant, toddler, and preschooler, so perhaps my other two children will also outgrow this behavior.

I have wondered what’s going on with these kids, though have chosen not to pursue any kind of diagnosis further. We have enough diagnoses to deal with, given my and my oldest daughter’s bone disorder. And while I do see challenges for all three kids in how they relate to others socially, thus far we’ve been able to support and strategize with them without additional interventions. I have three very quirky kids, and those quirks will no doubt make their lives harder at different points. Yes, all of us have quirks. But I still think some are quirkier than others, and for some, personal quirks cause greater difficulty than for others. So be it. We’re taking it one day, and one child, at a time.