Morphing diagnosis

By the time parents find us at the Boston or Worcester PAL office, their child usually has a lengthy list of mental health diagnoses.  Part of what might prompt that first call is the sense of panic or desperation a parent feels just reading and trying to absorb what this list means.  The more diagnoses, they reason, the worse off my child must be.  When we get to the part of the call where the list is recited, the diagnoses often are overlapping, repetitive or seem to have evolved something like this:  first there was ADD, then depression was added and later someone diagnosed (and added) bipolar disorder.  Anxiety or a sleep disorder was thrown into the mix along the way. On top of all that, no diagnoses whatsoever have been eliminated.

This experience is what I call the “morphing” diagnosis.  Remember those 90s videos or TV ads where one face was blended into the next and the next?  Wikipedia calls morphing “a special effect that changes one image into another through a seamless transition.”  Thus, the ADD child is changed into the depressed child and then into the bipolar child while the parent tries to understand what is taking place.

This is a very common experience.  And it happens to a lot of families.  According to the U.S. Surgeon General, mental health disorders occur in about 20% of children in any given year and about 5 million children and teens have a serious or significant mental health need that interferes with their daily life at home, at school or in the community.  Their families are usually trying to figure out what is going on, hoping that a clear diagnosis will open the doors to services that their child needs.  They find out that there isn’t a diagnostic tool like a blood test or an x ray and identifying what’s going on can be tricky.  Piecing the picture together usually relies on the observations of teachers, family members, doctors and others and their observation skills can vary greatly.

But finally someone does arrive at a diagnosis.  Then maybe another.  And a different therapist or someone during a hospital stay adds yet another.  Parents often ask, If no one can agree on my child’s diagnosis, then how can I ever decide on what treatments or services he (or she) needs?

Treatments for children’s mental health disorders are being studied and evaluated with the goal of matching the most effective treatment to a specific mental health disorder. We are hearing more and more these days about “evidence based practices” in the children’s mental health system.  It conjures up the feeling that science and precision will be applied to matching the “right” treatment to any child with a mental health disorder.  There is already strong evidence that certain medications are effective for children with ADHD and cognitive behavioral therapy is a promising treatment for children with anxiety or depression. 

But therein lies the rub. An accurate picture of what is going on for a child with mental health needs is required in order to choose an effective treatment.  Therapists sometimes refer to the “art” of diagnosing and in the next breath outline the science of evidence based practice.  Perhaps this reflects where we are in the children’s mental health world.  Maybe it is morphing too — from a denial not too long ago that children’s had mental health disorders; to a recognition that adult treatments can be ineffective and even unsafe for children; to an interest in studying what truly works for children, youth and their families.

In the meantime, I think we’ll just keep answering those calls.

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7 Responses to Morphing diagnosis

  1. David Keller says:

    Couldn’t agree with you more; there is a reason that we doctor types refer to a diagnosis as a medical “opinion”. It is really hard to have “evidence-based” treatment when we don’t agree on the definition of the diagnosis. It is frustrating for parents, and, if the child’s disorder is mislabeled, we have a good chance of causing much more harm than good.

    My rules of thumb for parents:
    1) Remember that ALL diagnoses are opinions, not facts. (That is as true for strep throat as it is for bipolar disorder.
    2) Remember that ALL children develop and change over time. Every now and then, you need to sweep away the preconceived ideas in your head and rethink what is going on.
    3) None of this means that your doctor or therapist is wrong; it means that they are actively involved in your case. Worry instead about the folks who think that they ABSOLUTELY as sure that they know what is going on.

    Anyway, that’s one doc’s opinion. Nice blog, by the way.

  2. Meri Viano says:

    Morphing Diagnosis- how true!!

    This is the truth in our office in Worcester as you mentioned and hits me for my personal story.

    So many professionals and so many opinions that it feels like a bad dream that keeps coming. I wish that I had a direct support for the “upcoming” change that starting to take over the first diagnosis. I remember hoping that the label would stick so that I could grieve, stand strong and then move on. Every time I tried to do that – something would change. So much more then my daughter who had feeding issues. I would see her symptoms change overtime not drastically that I thought I was the one that had “created” the change.

    As you mention- Diagnosis- I also question the society acceptance or tolerance of certain diagnosis that allowed “our” children to get help , and some diagnosis that LOCKED the doors to assistance…

    I am thankful for the professionals and families that teach me something new every day to help my own children and many more…
    Meri

  3. Deborah Rose says:

    Keeping a daily journal of a child’s moods and activities is extremely helpful for an accurate diagnosis. Sometimes, as parents, we can focus on one or two things, while overlooking other behaviors or attitudes. Looking back over a month of comments gave me a lot of clarity and was very helpful for the treatment plans of both of my children.

  4. Nancy Collier says:

    As I read this post and your previous one, I am reminded of the old French Proverb, “The more things change, the more they stay the same.” You and I started together in the early ’90’s. As you know I left for a while and came back.

    I came back to a changing service delivery system to new families and new stories, but those stories ring a familiar tone. The morphing diagnosis is most definitely one of those familiar tones. The struggle to find “the answer,” that one peice of information that will unlock all the answers to all the questions.

    Diagnosis we had never heard of in the early ’90’s are common now. “Sensory Integration Disorder” was a newly recognized developmental diagnosis. BiPolar disorder in children was being hotly debated. These diagnosis helped provide some answers, but not the “cure” we were seeking. One of the more recent ones I’ve heard is “complex developmental trauma disorder.”

    One change I have noticed is professionals attitudes toward families. As Dr. Keller’s reply suggests, we are in this together, parents and professionals. The journey continues… onward and upward.

  5. Pauline says:

    And then there is NOS attached to confuse parents even more!

  6. Martha Heassler says:

    Can I add to this the dilemma caused for parents by the providers who say “don’t worry about your child’s diagnoses” — or “diagnoses really don’t matter so you need to keep quiet about them” — and then, “let’s just focus on your child’s behaviors”… There is also the dilemma caused by the often well-intentioned people who want to shame a parent for “labeling” the child with “diagnoses” to help them cope w/ their unique challenges…. This is an ongoing battle, even for those of us whose children are receiving services through the new wraparound process mandated by Rosie D… I find an ongoing conflict between those who need and value diagnoses and those who don’t want them discussed at all… I find this is especially hard when you’re dealing with teens who you are trying to help build a healthy understanding of their needs/concerns as they enter young adulthood. My 17-yo daughter and I are often caught in this battle w/ others and can only imagine that others face the same challenges… -MH

  7. Patti Hackett says:

    Lisa this is a well written blog and you launch it with the topic that is at the heart of the issue — KUDOS!

    Re the journey when do we ever get to arrive at the destination? Is there a destination – or several pit stops and new routes? While there is some nice scenery once in awhile- we all want to get out of the car/plane at some point and BE THERE.

    As a parent whose adult son now deceased (medically fragile/neuro muscular) who never got accessed for his mental health issues (his anxiety was well hidden a family trait: grandmother and me, his mom)…YOUR issues are on target…I agree with the previous comment re daily journal which aids all is assessing a clearer picture…and certainly the better we get at this, the treatment can be more defined.

    On a related note– as treatments get “tweaked” often the meds to do…So who is helping families and youth to track medication compliance? As family’s teach and monitor their child’s medication dispensing ability (love the little daily drug boxes) and later the youth increasingly does this independently – how do we really know if the meds are working if there is no tracking or end of the month assessment – how successful were we? If not, what strategy can be develop to improve compliance. (For my husband and I we assess our med compliance together for each other weekly-getting into the habit to make it automatic).

    As an adult who finally got a Dx 50 years late –I am now on this new journey trying to learn –take what my son’s life journey taught me…And yes agree the family the stories are familiar for me it’s what I have heard the past 37 years….hmmm…Medical progress has been made….What I suspect needs more of our attention is individual capacity and decision making…using assets not deficits..coaching not demeaning…

    I have worked on the national level on improving systems and services as a family leader and later as a paid health policy analyst – yet why are the outcomes for most of our children and youth the same as they were when I started in 1973? Policy and practice takes time….families, children and youth need changes and tools now….

    My new focus professionally is on accurate medical reporting to drive the medical encounter, increase skills and abilities to be involved and knowledgeable in medical decisions, improved medication compliance and maintain handheld medical records and of course increasing skills for children/youth involvement (or expanding a circle of support) along the way.

    Where my focus as an individual who is newly Dx…is on balance, increased awareness of daily triggers and more focused reporting with my medical team. I want health and wellness and (like the rest of you) I am not waiting for it – I am working forward to it. The knowledge,skills and abilities are lifetime issues learned over time more than can be attained in one great workshop(s). I’m not suggesting to scrap workshops, guides, manuals but there has got to be something that take great ideas to become personal action and increased knowledge?

    Maybe the ongoing blog that dialogues with authentic voice, has focus and offers strategies – that sense of urgency – is the new medium that contributes to individual change? Sure worth a try.