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.

 

 

 

About Ellen Painter Dollar

Ellen Painter Dollar is a writer focusing on faith, parenting, family, disability, and ethics. She is the author of No Easy Choice: A Story of Disability, Faith, and Parenthood in an Age of Advanced Reproduction (Westminster John Knox, 2012). Visit her web site at http://ellenpainterdollar.com for more on her writing and speaking, and to sign up for a (very) occasional email newsletter.

  • http://www.christianpiatt.com Christian Piatt

    Thanks Ellen. The more we talk about these issues, the more they become normalized, and the more we help make spaces for grace to enter in.

  • http://www.painandspirituality.blogspot.com Carol D. Marsh

    I love how much you love your kids.

  • Anne

    Just discovered this blog and am so happy to have done so! The crooked path of grace, indeed. Our third child is just in the middle of evals. and looks either highly sensitive or spectrumy (no surprise, since our oldest has Asperger’s and our middle son low-functioning autism), but it IS tricky knowing how much to intervene. Related to your post about inclusion in the church, there doesn’t seem to be a good fit for these kiddos in the school. Her ability to learn and to engage in the classroom is hampered by all the sensory STUFF going on around her, and yet, I’ve seen firsthand too much environmental retardation in special ed. to feel comfortable placing her there, so what to do, what to do.

    Anyway, I appreciate your thoughtful posts! I’m steering clear of the minefield that is prenatal screening, though. :)

  • Sarah M

    Thank you for sharing you thoughts; it’s a very interesting idea that Down syndrome or some forms of autism can be thought of as just being quirky. I’m also very interested to know where you saw information about the rising IQs of people with Down. It seems clear to me that early childhood intervention can do wonders (and that this idea applies to all children in fact).

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      Oh dear. When I wrote that, I thought “I really should find a citation!” Nearly everything I know about Down syndrome I’ve learned from my friend and colleague Amy Julia Becker, who also blogs here on Patheos, who has a daughter with Down syndrome, and who has written a fabulous book on her daughter’s first two years called “A Good and Perfect Gift.” That IQ stat is one I’ve heard her cite many times, so I stole it from her, knowing that I can trust her to know what she is talking about.

  • http://www.savingdowns.com Mike Sullivan

    Thank you for continuing the discussion around disability screening. There is a rapidly growing concern in the disability sector over the impact of increasing rates of disability selective abortion.

    Let’s remember that disability screening is currently primarily directed towards Down syndrome, because it is genetic identifiable, but the field is quickly expanding. Screening is offered to a pregnant woman where there is a wanted pregnancy; unwanted pregnancies do not enter the screening “pathway”. Where there is a diagnosis of, say Down syndrome, the wanted pregnancy then becomes conditional on choosing to continue with that pregnancy based on a subjective judgement as to the child’s worth and the social construct that such pregnancies be avoided. Then we have entered the field of eugenics.

    This is emerging as the defining issue for the Down syndrome community, as new technology for early term screening begins to drastically reduce birth numbers. It remains to be seen whether collective responsibility towards naturally occurring human diversity will triumph over society’s obsession with reproductive choice. Will groups like those with Down syndrome become another redundant species in the name of choice?

  • Mary Caler

    Ellen, I love this post. I have an 18 year old niece with Asperger’s and while it has caused her some challenges, she is a bright, interesting, and very quirky young woman. As a sociologist, I find it very interesting how what we consider “normal” and “abnormal” has shifted in recent decades, particularly with regards to things like Asperger’s. I know several college professors who probably would fit the criteria and were they born some years later probably would have been diagnosed with a disability. However, they are brilliant, well-respected leaders in their respective fields. I think you hit the nail on the head here:

    “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.”

    Have you ever read Erving Goffman’s classic sociology book “Stigma”? I think you’d find it really interesting, particularly as it applies to the effects of applying labels to people.

  • Chris

    There is some point at which personality preference becomes a disability. My 5 year old son is brilliant and “quirky.” He also requires a classroom aide to function in a kindergarten classroom. If Asperger’s Syndrome were merely a personality preference, he would not need speech therapy, play therapy, a stable routine, warnings for every transition, or other supports. Yes, he writes poetry and can do math years ahead of his grade level, but making it through the social demands of a 3 hour school day are exhausting for him.

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      That makes a lot of sense. And in this post I was exploring different ways of seeing such disorders, not making a judgment as to which way is the right way to see them. Thanks for your comment and good luck to your family.

  • http://www.lorrainewilde.com Lorraine Wilde

    I agree with your assertion that Asperger’s (and other disorders) might not truly be a “disability” if we’re able to remove societal judgements. Shifting will be difficult because parents of these children often need extra help in learning to accept and deal with these differences, and in a public school setting, these children can’t get the extra help or accomodation they might need without the “disability” label and the protections associated with that designation under the American’s with Disabilities Act and related legislation. I’ve also wondered similarly about other disorders, like sensory processing disorder, bipolar disorder, and depression. Thanks for stimulating the discussion.


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