No Labels…Should Diagnosis Matter at Church?

This  four part series: No Labels…Should Diagnosis Matter at Church? was originally presented on Church4EveryChild from January 22-31, 2012. 

Part One: The Purpose of Diagnostic Criteria

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?

Part Two: Do we put people in boxes?

I’ve seen two practices in the church that cause me to worry about emphasizing clinical diagnoses among those doing ministry with families of kids with disabilities…

Don’t get me wrong…It’s great that there are thousands of churches in the U.S. and beyond launching special needs ministries. Our team at Key Ministry is helping to promote the trend. But something bothers me about some of the ministries we see taking root.

As imperfect people, Christians are all too often quick to judge other people. We make lots of value judgments, including judgments about the causes of the disabilities experienced by kids who come (but are all too often missing) from our churches. We have “good” disabilities and bad disabilities!

Look at the focus of many of our “special needs” ministries…kids with wheelchairs, kids with Down’s Syndrome, kids with cerebral palsy and kids with autism…as long as they have severe challenges with communication and significant intellectual disability. The kids served by our “special needs” ministries are almost exclusively those with disabilities for which there is nearly universal agreement that parents bear no culpability.

Most people “get” what autism is about because of some fabulous public education initiatives. But way too many people think that ADHD is caused by poor discipline at home, anxiety is produced by a lack of faith and that depression persists because the person afflicted doesn’t pray enough. If we get hung up on diagnoses, the value judgments of too many people in our churches becomes an impediment to creating welcoming ministry environments for all kids and families.

The second practice I’m concerned about is the propensity of churches to address the need by starting programs led by people who develop expertise in “special needs” ministry that aren’t fully integrated into the most vital ministries of the church. After all, churches have lots of “silo” ministries…men’s ministries, women’s ministries, singles ministries, children’s ministries, youth ministries, family ministries and sports ministries. It may seem easier to train a team of people to serve kids and families with a defined range of disabilities than to create a culture of inclusion across all ministries that becomes part of a church’s DNA. The challenge is that no two people meeting criteria for a specific disability have the exact same gifts, talents or needs. If you’ve seen one kid with autism, you’ve seen one kid with autism.

I’ve been in psychiatry for 26 years, with a primary focus in child and adolescent psychiatry for 23 years. Figuring out what to do for individual kids and families is getting harder as I get older. I develop an increased appreciation on a daily basis of the complexity of the problems my patients and their families struggle with. The National Institute of Mental Health has a strategic plan focusing on research to make possible personalized medicine in treating people with neuropsychiatric disorders. We need personalized ministry at least as much as we need personalized treatment.

Inclusion ministry is ultimately about sharing the love of Christ with people who were created to be unique. It’s not about putting people into programs…it’s about offering the love of Christ in response to need. Assigning people to diagnostic categories at church doesn’t help us make progress toward that goal.

Addendum: Our friend and colleague Shannon Dingle posted on the topic of how much does a special needs diagnosis matter at church. She expressed what I was thinking as well or better than I did. Check out her post.

Part Three: Communication Breakdown…Doing Ministry Together Without Diagnostic Labels 

When we began this series of posts last Sunday, we examined the importance of diagnostic criteria for facilitating communication between clinicians and for helping them organize their thoughts in the service of developing a plan to “treat” the patient/client. This process is very necessary in treating diseases or disorders, but seems very much out of place when it comes to welcoming kids and families into communities of faith, sharing Christ’s love with them, and including them in activities and practices to help them grow to be more like Christ.

Using diagnostic language works in hospitals, clinics and physician offices, where nearly all the staff involved with direct service has been through rigorous professional training and a licensure process that ensures that everyone knows the common language. When professional people with experience in caring for persons with disabilities volunteer at church (this includes medical and mental health personnel, but also teachers with experience in special education) they can easily slip into the language they use at work. It’s easy to see the problem such language could create at church…everyone at work may know what they’re talking about when they use the words “bipolar disorder,” dyslexia or Tourette’s syndrome, but not everyone volunteering in a church will understand those terms.

If we decide not to use a medical-based model as a common language around which to serve kids and families in churches, we need a common language for communication with one another that can be readily understood by every staff person and every volunteer at church. I’ll argue that it’s best to to use everyday language while guided by a set of communication principles.

My Key Ministry colleague Katie Wetherbee (pictured with kids) is in the middle of an outstanding series on confidentiality and communication at church. I’m going to encourage you to check out her posts on a thought process to guide written and verbal communication at church, strategies for maintaining confidentiality, and describing behavior in a non-judgmental manner. In addition to Katie’s excellent resources, I’d encourage church staff and volunteers to be intentional in using “people-first language.“

None of this is to say that there isn’t an incredibly vital role for trained clinicians in your church’s inclusion ministry. If you’re fortunate to have physicians, psychologists, speech and language pathologists or special education teachers available to you who can borrow from their training and experience in ways that inform the rest of the team how to more effectively administer to kids and families, by all means, take advantage of their expertise!

On several occasions, I’ve done observations and assessments of individual kids presenting challenges to churches served by Key Ministry. When I’ve been asked to do this, I’ve made it clear to parents that we’re not performing a clinical service, although I will call the child’s pediatrician or treating clinician at the parents’ request to share my observations. A consultation is unlikely to be effective if I’m unable to communicate my thoughts and ideas to the ministry team in clear and practical language.

The New York Times has certainly been a helpful resource in generating content for the blog the past few days. Dr. Gary Greenberg (a clinical psychologist) wrote an op-ed piece today on the controversies around the update of the DSM-V, the manual psychiatrists, therapists, educators and the government use to categorize mental disorders. He raised a couple of points that are relevant to our discussion…

“But as all those Diagnostic and Statistical Manuals have stated clearly in their introductions, while the book seems to name the mental illnesses found in nature, it actually makes “no assumption that each category of mental disorder is a completely discrete entity with absolute boundaries dividing it from other mental disorders or no mental disorder.” And as any psychiatrist involved in the making of the D.S.M. will freely tell you, the disorders listed in the book are not “real diseases,” at least not like measles or hepatitis. Instead, they are useful constructs that capture the ways that people commonly suffer.”

We also need to consider this…

“Psychiatrists would like the book to deserve a more serious take, and thus to be less subject to these embarrassing diagnostic squabbles. But this is going to require them to have what the rest of medicine already possesses: the biochemical markers that allow doctors to sort the staph from the strep, the malignant from the benign. And they don’t have these yet. They aren’t even close. The human brain, after all, may be the most complex object in the universe. And the few markers, the genes and the neural networks, that have been implicated in mental disorders do not map well onto the D.S.M.’s categories.”

One of the challenges of our diagnostic system is that the DSM isn’t really grounded in anything. Our diagnostic system is a set of descriptors and checklists that doesn’t really tell us a whole lot about the underlying causes of the problems presented by the people we serve.

This problem is compounded by the reality that there are too many clinicians who aren’t particularly conscientious about sticking to the criteria as written. A terrific example of this phenomena is the explosion in the number of kids diagnosed with bipolar disorder. As a result, I see lots of kids who are just flat out incorrectly diagnosed, and kids with diagnoses that change frequently over time. You don’t want to base your entire strategy on serving a family upon something that is highly subjective, open to wide interpretation and constantly shifting.

Here’s something else to consider…We see many kids and adults diagnosed with specific disorders who begin to derive part of their identity from their diagnosis. This phenomena has been discussed during the debate about whether Asperger’s Disorder should be eliminated as a stand-alone condition separate and apart from autism. Shouldn’t our identity at church (and everywhere else) be defined by who we are in Christ as opposed to  the diagnostic labels employed to serve us?

One last thought that may have crossed your mind in reading this series. In the “Let he who is without sin cast the first stone” department, you may have wondered why the guy who is criticizing church folks for getting hung up on diagnosis has a resource center link on ADHD and Spiritual Development. Just a wee bit hypocritical, don’t you think?

Ultimately, what we’re all about is helping churches reach families affected by disabilities. We have lots of parents who are also pastors or church staff members who discover our resources on the Web by entering search terms like “anxiety” “ADHD” “Bipolar Disorder” “Church” or “Special Needs.” We’re simply trying to disseminate our resources to as many churches as can use them. Parents who search for resources by googling their child’s diagnosis (because the diagnosis has meaning to them) will often forward our info to church staff or volunteers.

Bottom line…We can minister effectively to kids with disabilities and their families without requiring knowledge of diagnoses that may or may not be accurate or by defining children and their adults by their disability as opposed to by who they are in God’s Kingdom.