This post begins a four part series: No Labels…Should Diagnosis Matter at Church? Today, we look at the purpose of diagnostic criteria…and whether they serve the purpose of the church.
Dr. Fred Volkmar, chief of Child and Adolescent Psychiatry at Yale-New Haven Children’s Hospital and Chair of the Yale Child Study Center created quite a stir within the special needs community this past week when he presented findings from a study demonstrating that 55% of persons currently diagnosed with autism (and 75% of persons with Asperger’s Disorder) will no longer meet the revised criteria for the diagnosis proposed in the DSM-5, the manual used to diagnose mental disorders.
From time to time, leading researchers and clinicians in the mental health field come together to review the appropriateness of the diagnostic criteria we use, consider the evidence for including additional conditions in the DSM-5 and eliminate others, in a process that often generates great controversy. There are three primary purposes served by establishing common criteria…
Common criteria help ensure that our diagnoses are both accurate and consistent. They’re essential for communication between clinicians throughout the world. If one of my patients with ADHD moves to Paris, the physician assuming responsibility for their care needs to be working from the same understanding of the criteria for ADHD that I do.
Common criteria that are consistent and reliable are essential for meaningful research into the underlying causes and risk factors for psychiatric disorders, determination of the incidence and prevalence of specific disorders and the comparative effectiveness of different treatments.
The process of establishing a clinical diagnosis and case formulation helps us to organize our thoughts about how to best treat our patients. When we have residents and medical students rotating through our practice, one of my admonitions to them is “I don’t care what you call it, as long as you know what to do about it.”
Changes in our diagnostic criteria are a big deal because the criteria are used for a multitude of other reasons other than those for which they were originally intended. Consider a few of the ways in which the criteria are used…
- Practitioners and hospitals use diagnoses on the claim forms they submit in order to be paid for their services. Insurance companies and pharmacy benefit managers all too often use diagnostic codes to avoid having to pay for specific treatments.
- Pharmaceutical companies need to conduct research trials demonstrating the effectiveness of their products for specific psychiatric diagnoses in order to market their products legally in the U.S. and receive payment from government-funded health care programs. As you might imagine, changes in diagnostic criteria producing increases or decreases in the pool of potential customers is of great interest to the pharmaceutical industry.
- Diagnoses are required by law for children with disabilities to receive accommodations in public education, and help determine eligibility for special education services.
- Diagnoses are used in determination of eligibility for disability benefits.
- The presence of a diagnosis often contributes significantly to the identity of persons with disabilities. Many “Aspies” (as they refer to themselves) have vociferously protested the proposed elimination of Asperger’s Disorder from the DSM-5 in favor of inclusion into a broader classification of autism spectrum disorders.
Think about this…Diagnosis is ultimately used as a tool to facilitate the treatment of patients/clients with identifiable medical/psychiatric disorders.
Does the church treat kids with disabilities? Or do we disciple them?
Tuesday: Do We Put People in Boxes?
Church4EveryChild 
We certainly don’t “treat” children at church by any means, but autism also has an educational diagnosis, and we do “teach” children. The standards by which a child is educational diagnosed with autism is also different from the medical diagnosis, and sometimes a child with a medical diagnosis does not meet the criteria on the educational side. I don’t necessarily like “labels” but they do help us to see things in a different perspective (sometimes good, sometimes bad). For instance, a long time ago we had a child attending church whose father refused the diagnosis of autism for his child. He didn’t let anyone know about his child’s disorder (and it was before my world crashed into the world of autism – having 3 of my own children on the spectrum). His father said his child was just “strong-willed” and went along the route of trying to discipline it out of him. After my children were diagnosed, and i understood (or at least better than before) what autism was and how those living with it had trouble in different situations, it would have made a WORLD of difference for this child’s experience at church and in life. Fortunately, this child was finally allowed to be who he was created to be. Dad finally accepted the diagnosis, and that child has finally received acceptance he once did not have. I think after our kids were diagnosed, it may have given that family a level of comfort to know and see that it wasn’t the end of the world, and there was hope. So sometimes labels help.
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Hi Charlotte,
Thanks for your post.
Let’s consider the family you described. I can see where the father’s acceptance of the diagnosis would make a huge difference in the way he related to his son. But why would a diagnosis have changed what your team did for him at church?
Many parents of kids with hidden disabilities are reluctant to disclose their child’s disability to church staff or volunteers. They themselves may not be aware that their child has a disability or struggle with denial about their child’s condition. Many parents fear being judged by others in the church. They may fear that staff or volunteers will share information about their child’s condition they wish to keep confidential. It’s probably the exception as opposed to the norm that church staff and volunteers will know a child’s diagnosis. We’re assuming the child has been diagnosed correctly by an appropriately trained professional (often, a BIG assumption). But you’ll still try to share God’s love with every kid coming to the church, and you’ll adapt what you’re doing to what you observe of the child’s learning style, social interactions and behavior, regardless of whether the child has a diagnosis or not and regardless of whether the church staff and volunteers are aware of the diagnosis.
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I see that, and it should not matter. i completely understand the feelings of judgment. i have all too often had the stares and the whispers from when one of my children is having a meltdown because the song that was played was not the right one and i’ve seen the irritation on the faces after my daughter has asked them the same exact question for the 10th time in the last 5 minutes. And in those situations, offering the label “autism” seems to help that person be a little more patient with my child. BUT, truth be known, it shouldn’t matter whether or not the child has a disorder, ALL children, (or adults for that matter) should be treated with kindness, respect, and understanding. I guess the labels help fallen humanity muster up just a little more patience and understand at times before they begin to judge. The other side of labels though, is that often people will short change someone and not think they are able to participate just like everyone else. And sometimes they bring a kind of fear to people because of the lack of information.
This side of Heaven, I think we have to look at each situation, and try our best to do what is right and what is most helpful, even if we don’t know what that is. What we now implement is exactly what you are describing above. We have people in place to be any child’s buddy for any child who just needs an extra help and some extra love & attention regardless if it is because they have autism, or CP, or maybe just a little shy because it’s their first time here.
I will say that the first example happened when i was just a young pup in ministry (i believe it was my first year) and OH BOY WOULD I DO THAT OVER AGAIN! I’ve learned so much since then.
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