Tuesday, July 13, 2010

Diagnosis: Does it Help or Hurt?

I received an email yesterday talking about yet another “new” disorder. This disorder was for people who fixate on eating healthy. The author was talking about how people who don’t care what they are eating are “healthy” and those who do have a disorder. Hmmmm…. That just didn’t feel right to me. So, after hearing about this “disorder,” I decided it was good to look a little deeper at the highly charged topic of diagnosis. When I was getting my masters degree in marriage and family therapy, I was really good at applying the criteria of different diagnostic codes to behaviors. It felt like a puzzle to look at symptoms and find how they all fit together, as if this now solved the world’s problems- or at least a family’s biggest challenges.

Everywhere we look nowadays, children are being diagnosed and labeled with disorders, with acronyms being placed near their names. “Johnny has ADD, that’s why he can’t sit still.” “Sherry has RAD and that’s why she can’t attach to us.” “Vinny is on the (autism) spectrum.” But how does it help to label our children?

Labels: How are they chosen?

The reality is that labels are usually chosen based upon behavioral checklists filled out by parents and teachers. It is an unscientific process based upon what the adults in a child’s life are seeing. That viewpoint is a creation of what our culture tells us to look at. But what if we aren’t seeing the whole picture? What if we don’t understand the relationship between the behavior and what the child has been through? Perhaps we’re only seeing a small piece of the puzzle and trying to make a decision based upon our view.

Shifting Your Perspective

Consciously Parenting’s first Principle states: All Behavior is a Communication. Let’s look at an example and see what that might mean. We’ll take a hypothetical child who has been diagnosed with Reactive Attachment Disorder. Let’s say that Sherry was adopted at age 4 from a Russian orphanage where no one held her and she spent the first four years of her life in a crib with little interaction with caregivers. Sherry adapted to her environment, which included very little contact with people. Her brain and body adjusted to the lack of input, touch, and connection that her body expected when she was born. When she was adopted by a loving couple, she clearly communicated what she had experienced in the orphanage through her behaviors with her new parents. All her life, touch and human connection had been missing, so when her parents tried to hold her she would just go limp in their arms, refusing to look them in the eyes. She clearly didn’t want to be rocked to sleep and preferred to be on her own making strange noises. Her behaviors are perfectly normal for the environment she spent her first four years living in, but considered maladaptive in the new environment.

In the case of Johnny with ADD, I would wonder who else in the family has difficulty focusing? What is Johnny communicating about what the family needs? How can meeting Johnny’s needs help the whole family? What if no one in the family is really able to focus attention on anything for very long? Who decides when a behavior is really a problem? What is Johnny really communicating?

Does a Label Help?

Some parents feel somewhat crazy when confronted with a child’s different or difficult behaviors. These parents feel better when they understand that what their child is experiencing isn’t unique to their child. It allows parents to find other parents who may be working with similar circumstances. Sherry’s parents connected with a great yahoo group to talk with other adoptive families facing similar issues that they found once they had a label to put into a google search. Certainly, having a diagnosis can take the pressure off and create more room for understanding.

In the case of Johnny, we might find more information about ADD and realize that the family’s diet is really out of balance. They might discover that there is too much time in front of a screen and not enough time to exercise, and that the whole family really needs to get outside more. Or maybe that everyone needs to learn how to just sit and be present with one another.

Can a Label Hurt?

Once a label has been used to refer to a child, we might start talking about it in our everyday descriptions and explanations of the child. “Johnny can’t sit still. He has ADD.” It can easily become a defining trait by which we refer to a child, which leaves no room for a child to shift and grow into something else. When we start to understand why a behavior exists, we can meet the underlying need and release the need for the behavior. (Consciously Parenting’s 2nd Principle: A need when met will go away. A need unmet is here to stay.)

Sometimes when a label is used, we miss the opportunities for the underlying cause. There are no cases of ADD caused by a deficiency of Adderal or other pharmaceutical, even though that is the way the diagnosis is most often treated. Remember that there is no chemical test, brain scan, or other diagnostic testing done- it is only diagnosed by using a behavioral checklist. But behaviors are symptoms to be understood, not eliminated or covered up.

When we decide that our child has a “disorder,” it sets into motion thoughts, words, and actions that reinforce the label. It also stops us from wondering what else could be happening or what else our child is trying to communicate to us. It is when we stop trying to understand that we often stop connecting. The child labeled with Oppositional Defiant (ODD) might really need an outlet for the anger around his parent’s divorce from someone who really understands. Or perhaps he is feeling really disconnected from himself and from his parents. But we won’t find those underlying needs if we stop looking for them.

Our Words and Intentions are Powerful

We are dynamic, rapidly changing individuals, particularly as children. When people believe in us, in our ability to change and grow, we are able to blossom. When we have people limiting us, we will limit ourselves and may not grow into our potential. Our words as parents and teachers have the potential to allow our children to expand, learn, and grow. Or not.

Children are programmed to believe the things we say. They don’t have a choice in this, especially as young children. Bruce Lipton’s research has proven that our children are much more than a pool of genes that are turned on or off. Our expectations, words, and intentions can literally build our children up or break them down.

When we apply a label to a growing child, we may unwittingly limit our own expectation of what the child will do. There are enough obstacles in life without us adding to it. When we put in these obstacles, we may cut ourselves off from the miracle that was around the corner because “it is impossible.”

Everyday Miracles

We used to think that it was impossible to run the mile in under 4 minutes until someone did it. And now many people have run it in under 4 minutes (though not me!). We used to think that children who had poor early experiences were doomed to becoming violent and unproductive members of society. But now we know that it doesn’t need to be that way. I have personally seen children diagnosed with Oppositional Defiant Disorder become relatively calm and happy children because the parents were able to let go of the label and connect with the  child beneath the outer behaviors. When we start to see the child as “doing the best she can do” instead of “trying to hurt me,” everything can start to shift. If we expect our child to act a certain way, we will not be disappointed. Underneath a child’s “negative” behaviors is a child who wants to be loved and to love, who needs to connect with others in order to survive and thrive. It is we who need to shift and begin to look at our child with new eyes. It is only then that we can begin to see the miracles.


brenkachicka said...

Here's a post I wrote about labels and how I feel about them:
Interesting post. I believe labels have their place. Twenty years ago my autistic son would have been labeled as "trouble. He would have been left to stim in the back of a classroom. Because he has this label he has the supports he needs firmly in place to help him reach his potential. He's a brilliant kid.

Rebecca Thompson, M.S., MFT said...

Brenachicka, I really appreciate your comments here. Sometimes a label can open doors and allow an appropriate treatment to happen that would have otherwise been impossible. And a label, when applied correctly, opens doors instead of closing them. It sounds like your son is lucky to have you for his mom! :-)

I really enjoyed Aditi Shankardass' talk on TED where she was actually looking beyond just behaviors and looked at EEG's to diagnose and provide proper treatment for these children.

Rebecca Thompson, M.S., MFT said...

Here is the clickable link

brenkachicka said...

Were do you go to get an EEG?
I would love to see what the results are for my ten year old daughter - she has really been struggling in school. She had a TBI at age 2. Her teacher last year thought it was more attitude problem than learning disability. (She's on the speced radar since kindergarten.)
My 8 year old son is thriving currently. If you met him you may not even notice the autism at first. His latest accomplishment: starting an engaging conversation with a couple who was traveling and visiting our church!

Bob Collier said...

You write: "The reality is that labels are usually chosen based upon behavioral checklists filled out by parents and teachers. It is an unscientific process based upon what the adults in a child’s life are seeing."

That's right, and in other words it's not actually a diagnosis. It's merely a subjective assessment that people choose to refer to as a "diagnosis".

More on that here:

"ADHD [in this particular case] is not a diagnosis, legitimate or otherwise PERIOD! A diagnosis is reached after examining symptoms and carrying out appropriate tests by reference to a known aetiology. ADHD has no universally accepted aetiology and there are no tests for it short of a tick box classification based often on second hand subjective value judgements on what is normal behaviour. Therefore there is no diagnostic formulation. It is highly unusual and deeply disturbing that some of this "diagnosis" is not carried out by medical professionals at all. Many of the children who have had this condition inflicted upon them have had it done by schoolteachers and teaching assistants whose knowledge of the subject has been gleaned from cod psychology articles in the plethora of "health" magazines to be found in the newsagent. In many cases that is the sum of the scientific basis for this "diagnosis"."


Sarah said...

That clip on TED is amazing (and so scary that this went on soooo long.) I'll be sharing on FB!

I talk a lot about labels in my book!

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