It’s a list—punctuated, it's worth noting, with the word “disorder”— that will be familiar to parents and caregivers of children struggling with difficult-to-diagnose neurobehavioral challenges:
Oppositional Defiant Disorder
Attention Deficit Disorder
Reactive Attachment Disorder
Post-Traumatic Stress Disorder
Autism Spectrum Disorder
Fetal Alcohol Spectrum Disorder
These are just a few of the diagnoses that children who have behavioral challenges might accumulate over a lifetime. Parents understandably have difficulty sorting out what all of these diagnoses mean for their child, and the specific ways they should parent in light of each different label their child might have received. There is a frequent hope that with the right diagnosis, the way forward will become illuminated, and the confusion a parent has experienced over how to best support their child will dissipate.
But instead of bringing clarity, a diagnosis—or several diagnoses— can sometimes further cloud the picture.
In my experience as a therapist who works with families experiencing this dilemma, the multiple diagnoses suggest that there has been confusion amongst providers as to what exactly is going on for this child, and that no one has taken a step back to consider the role of brain function. I believe that if we can move away from the specific diagnosis, seeing the brain as the organizing principle and the source of all behaviors, we can begin to view behaviors as symptoms of brain dysfunction. When this happens, parents and providers can shift from reacting to reframing in ways that are consistent with the latest neuroscience research.
For parents, teachers, and other caregivers, viewing the brain as the organizing principle not only helps with understanding the source of the challenging behavior (often, it’s lagging cognitive skills coming up against poorness of environmental fit), it also opens a new path for supporting and intervening with the struggling child. Shifting the perspective of the presenting problem almost always unveils a new set of possibilities in terms of how to understand, care and support.
Within the neurobehavioral model (as developed by Diane Malbin founder of FASCETS), primary characteristics are defined as learning, developmental and/or physical responses to the environment and other behavioral symptoms that have been associated with differences in brain structure and function.
We define secondary characteristics as normal, defensive behaviors that develop over time as a result of chronic frustration, trauma, and/or failure, reflecting a “poor fit” between the needs of the person and his or her environment.
How then does the neurobehavioral model, specifically primary and secondary characteristics, fit within the framework of the multiple diagnoses a child may receive?
It may help if we use a few of the more common diagnoses as examples. Most often, when a young child who has a brain that works differently (due to trauma, neglect, prenatal substance exposure or a myriad of other factors) is struggling behaviorally, they receive a diagnosis such as ADD (Attention Deficit Disorder) that describes primary characteristics. Qualifying behaviors such as “easily distracted" … “difficulty with transitions” … “difficulty organizing tasks and activities”… and “talks excessively,” are a few of the criteria in receiving this particular diagnosis.
As the child grows older, experiencing a chronic poorness of fit within their environments because brain function is not being considered, they often will begin accumulating diagnoses that reflect secondary characteristics (symptoms of pain, discomfort and distress from not being understood). These diagnoses, such as ODD (Oppositional Defiant Disorder) and Generalized Anxiety Disorder, have behavioral criteria such as, “often loses temper” … “often refuses to comply with rules” … “often argues with authority figures” … “irritability” ... “feeling restless or on edge.”
In both cases, a behavioral lens is being utilized to make the diagnosis.
If we see these behaviors as the target for our intervention instead of taking a step back to consider brain function, to explore the actual causes of discomfort and distress, and to scrutinize areas in which there is a poorness of fit, we miss the opportunity to develop accommodations to help a child be more successful in their given environments. Instead, because we are missing crucial information about the brain’s involvement, we might lecture the child, attempt to exert more control, and give harsher consequences.
Frustration increases, along with a growing hopelessness that things might ever improve.
Medications are often prescribed while looking through a behavioral lens, without first considering if accommodations based on brain function and/or modifications to the environment might decrease the challenging behavior on its own. This is why the diagnosis, in and of itself, does little to help explain brain function, and falls short of describing what a parent needs to do differently to help support their child.
There are certainly valid and important reasons to receive diagnoses for a child (state/federal benefits and access to support dependent on a qualifying diagnosis, being two of them), but when it comes to day-to-day support and parenting of children whose brains function differently, I always encourage my clients to move away from these various labels and see the brain as the organizing principle, using the neurobehavioral model as the framework.
This focus-on-brain leads us to ask helpful, empathetic questions such as these:
What are the challenging behaviors communicating?
Are they revealing primary or secondary characteristics?
What are the behaviors in reaction to?
Where does the child experience difficulty in their environment (what is the problem to be solved, the trigger, or the task/expectation they are consistently “refusing” to comply with)?
If we believe—as I’m certain we should— that if a child could do better, they would, then why do we think they might be having such a challenging time with the given task or situation?
How can we link all of this information back to brain function?
How can we then move into brainstorming appropriate accommodations, so that the child can settle in their environment, and find the greatest measure of success?
Interested in learning more about how to identify the brain tasks your child has difficulty with or about the work Eileen does with parents and parenting with a neurobehavioral approach? Visit fasdnorthwest.com and reach out to her directly. She’d love to hear from you.
Eileen Devine, LCSW works in Portland, OR as a therapist supporting parents of children with special needs. She is also a consultant for families impacted by FASD and other neurobehavioral conditions through her private practice, FASD Northwest, working with families nationally and internationally. She lives with her husband and two amazing kids, one of whom happens to live with FAS. For more information, visit fasdnorthwest.com.