Oppositional Defiant Disorder: A Tragic Misunderstanding of Neurodiverse Children
Updated: Sep 21, 2021
Here I find myself again…. Lying in a defeated heap on my trusty bathroom floor mat. Crying, not soft sobs, but the heaving, gasping sobs of despair that can only come from love and loss. In this instance the love is my love for my son. The loss is the loss of yet another battle. These battles, all too common in our home, are all consuming and brutal. They are matches between us as caretakers and the little yet powerful being of our 5 year old son. Episodes are the more clinically accurate word, but they feel like battles. These episodes have become my purpose in life in many ways. It has become my purpose to help my son and our family. But my even greater purpose is to help other children like him and their families as well. You see, the beauty of my profession as a play therapist means that I know I am not alone, unlike many other families like ours. These types of episodes cultivate strong feelings of shame and guilt in parents. It is this shame and guilt that often prevent people from being honest about their experiences. This leaves families feeling overwhelmed, scared, and alone. But I see it. I get to see the real realities of these families. In them, I see the real and raw realities of my own as well.
Contrary to what some may be imagining at this point, these are not your average temper tantrums. To witness one of these episodes is to witness a child tormented and in pain (Elman and Borsook, 2018). It is like watching a wounded animal lash out desperately at those trying to help it. And when I say lash out, I mean lash out! These episodes may ramp up with provoking and annoying others, meanness, and / or vindictive actions. Often, but not always, the lashing out involves aggression: hitting, biting, kicking, slapping, and throwing. These are often par for the course in the episodes of these “intense kids”, a phrase I use describe these beautifully intense and challenging children. In addition to the physical aggression, there is often a very intense verbal component to these episodes. Lisa Dion refers to this as the “set up” (2018). According to Lisa Dion, “As children set us up to feel how they feel, they have the opportunity to watch us manage the sensations and emotions we’re holding” (Dion, 2018, p. 97). Children will set us up to feel many things during these episodes. They will set us up to feel rejected, hated, despised, hurt, overwhelmed… to name a few. This is often intense and shocking. In my own experience it has meant being told my little boy that he wants me dead. That he hates me. That the whole neighborhood hates me and that they all want me dead, never to come back ever again (or maybe it was never, ever, ever again). He has said that he wants to kill me. He has been terrifyingly specific about ways he wants to kill me… I’ll spare you the gory details. He has said that we (myself, my husband, our family, “everyone”) hate him and wish he was dead. That we wish he wasn’t part of our family. These are just some examples of the intensity of the verbal set up that can take place in these episodes. These children often feel hated, they feel unwanted, they feel that their families wish they were not around… so they set us up to feel this pain. And boy do we feel it. Deeply and to the core. As I share these examples with you, I myself am fighting against feelings of embarrassment, shame, and hurt. You see, I specialize in the inner workings of children. I specialize in helping children and families. Yet how is it that my son can suffer this much and how are we failing him to this extent? As I was experiencing this on a personal level, in my practice over the years I have also experienced this professionally, through the window of clients and their families. It is the combination of these personal and professional experiences that have fueled my passion to get to know these kids better. There is a distinct profile of children and families who suffer in this way and it has become my mission to help them. These children are grossly misunderstood and we as parents and providers are often misguided about the best ways to help them and uncertain where to go for answers.
The term “intense kids” comes from my observations that these kids are both intensely challenging AND intensely and beautifully sensitive. Often these kids have a high capacity for empathy, are more observant than most, have memories that astonish, and are, in essence, some of the most beautiful children that I have come to know. Often these kids have some sort of sensory component at play. Meaning they may be hypersensitive to external stimuli such as noises, light, touch, etc. They may be more affected than most by certain foods (i.e. dyes, preservatives). They are highly impacted by changes in sleep and / or diet and by bodily signals, like hunger and fatigue.
In addition to a fantastic memory, these kids often tend to hyperfocus or perseverate on things. This can come from a place of interest, which may look like kids being immersed in something they enjoy (i.e. legos, art). Often though, we see it as part of seeking. Seeking behaviors are an attempt to soothe psychological pain or unrest. What this looks like in real life is a kid getting “stuck”. They are stuck on one thing they need, stuck on an outcome, stuck on a behavior (i.e. desire to engage with screens). This seeking behavior is an attempt to escape or avoid distressing feelings.
These intense kids are often intensely sensitive to input from others, including: nonverbals, tone of voice, and the emotional state(s) of others. These are the kids that can sense how you are feeling from a mile away, despite any attempts to disguise. They pick up on the energy in the room and they respond accordingly.
Heightened sensitivity to external stimuli, internal processes (i.e. feeling hungry, tired), and interpersonal input lead these kids to feel easily and often overwhelmed. Cue said brutal episodes. At the risk of oversimplifying, we could categorize this profile of child as follows:
- Highly sensitive to external stimuli.
- Highly sensitive to interpersonal input (mostly nonverbal feedback from others).
- Highly sensitive to internal bodily signals (i.e. hunger, fatigue).
- Heightened cognitive functioning in certain areas, such as attention (hyperfocus), perception (environmental and interpersonal input), and explicit memory.
- High incidence of overwhelm, leading to frequent and intense emotional and behavioral episodes.
Also very common with these beautifully intense children and their families are:
- Negative perceptions of how others feel about them (feeling hated, unwanted, disliked)
- Negative perceptions of self.
- Family conflict (conflict between parents, conflict between parents and child, conflict between siblings).
There is no diagnostic criteria that completely captures this profile. Some of these kids may meet PARTS OF the criteria for Autism Spectrum Disorder, Attention-Deficit/Hyperactivity Disorder, Anxiety Disorders… but typically these diagnoses fall short. What most of these kids do meet, is the diagnostic criteria for Oppositional Defiant Disorder (ODD). Especially kids on the older side that have been living with these challenges for longer. The reason being, the negative feedback loops in place have had more time to do damage. By negative feedback loops I mean this: child has significant challenges, parents don’t know how to respond and are overwhelmed, there is instability, conflict, and chaos in the family, there is frustration for child, parents and siblings - which all feeds into the negative perceptions of self and of how child perceives others feel about him or her, which leads to more challenging and difficult episodes and behaviors. And on and on it goes.
Let me share with you some of the diagnostic criteria for ODD (American Psychiatric Association, 2013):
Child has the following symptoms (only 4 symptoms are required from any category and symptoms only need to be present with one individual, who is not a sibling)
Angry / Irritable Mood
1. Often loses temper.
2. Is often touchy or easily annoyed.
3. Is often angry and resentful.
Argumentative / Defiant Behavior
4. Often argues with authority figures or, for children and adolescents, with adults.
5. Often actively defies or refuses to comply with requests from authority figures or with rules.
6. Often deliberately annoys others.
7. Often blames others for his or her mistakes or misbehavior.
8. Has been spiteful or vindictive at least twice within the past 6 months.
The disturbance in behavior is associated with distress in the individual or others in his or her immediate social context (p. 462).
This is an abbreviated snapshot of the diagnosis of ODD, but most parents of intense kids would see their child in many, if not all, of these criterion. I certainly would check off every single one of these for my own son.
So what’s the problem? If there is a diagnosis in which the criteria fit the child then why are we still talking about this? The problem is that the diagnosis of Oppositional Defiant Disorder (ODD) is one of the more cringe worthy diagnoses in the Diagnostic and Statistical Manual of Mental Disorders Fifth Edition (DSM-5). In fact, many therapists don’t like to use this diagnosis because of the negative stigma that accompanies it. The unspoken feeling that stops us is that in labeling a child with ODD we are labeling them as a “bad kid”. Due to the many positive qualities of these intense kids, this creates a cognitive dissonance that often prevents us from providing this diagnosis. We also may find pause in providing this diagnosis due to the negative connotation it implies about family dynamics. The DSM-5 states that “harsh, inconsistent, or neglectful child-rearing practices are common in families of children and adolescents with oppositional defiant disorder, and these parenting practices play an important role in many causal theories of the disorder” (American Psychiatric Association, 2013, p. 464). The description of child and family portrayed by the DSM-5 diagnostic criteria often simply does not fit the children and families in front of us. In fact, I would say the majority of families in which I see this profile do not fit this description.
One more point worth noting here, the diagnosis of ODD is categorized in the DSM-5 under Disruptive, Impulse-Control, and Conduct Disorders. This category addresses the emotional and behavioral presentations of these intense kids, but it does not accurately encompass the neurodevelopmental components at play.
I have spent years reading, researching, observing, and talking with families and other clinicians. It has been my mission to figure this out and articulate it, with the purpose of not only better understanding and helping my own son, but also with the goal of helping all of the children like him. I want to be able to put this into words in a way that helps families and clinicians understand these children and know how to best help them. It has been a slow evolution of thought and understanding, but I now am beginning to understand the processes at work in these intense kids. Or, more accurately, I am beginning to understand what questions to ask and what areas in which to conduct further research. What I have come to believe is that the diagnosis of ODD is a tragic misunderstanding of neurodiverse children.
My theory is that this is a brain issue. Specifically, that these kids are born with increased cell density in the amygdala and associated circuits of the brain, causing these areas to be hypersensitive and reactive. This has been found to be true in children with autism spectrum disorder (ASD), where researchers have found that individuals with ASD are born with an excess of neurons in the amygdala (Avino et al., 2018). I assert that a similar issue is at play for these intense kids as well. The human amygdala encompasses several brain structures, which play a crucial role in fear, emotion, and social behavior (Adolphs, 2010). This is the threat detection center of the brain. This is the part of the brain responsible for bringing in and evaluating all sorts of sensory input. In addition to input, the amygdala and related structures are responsible for sending output to various other parts of the brain. Output from these amygdala structures sends messages to other areas of the brain responsible for emotional reactions and physiological responses (LeDoux, 2007). If these kids have increased sensitivity (input) and reactivity (output) in these areas this could lead to:
- Heightened sensitivity to external, internal, and interpersonal stimuli
- Increased likelihood of input being perceived as a threatening
- Increased physiological (sympathetic arousal) responses (Elman and Borsook, 2018)
- Increased emotional responses (Elman and Borsook, 2018)
- Increased behavioral responses
o Escape (running away)
o Fight (aggressive behaviors)
o Avoidance, including activation of the libidinal drives causing intense seeking
behaviors (Elman and Borsook, 2018, p. 3)
- Disruption in healthy attachment due to increased experiences of the neuroception of danger (Badenoch, 2008), inconsistent parental responses, and increased chaos and conflict in the home
- Reduced integration of brain structures and function leading to increased rigid and / or chaotic presentation (Badenoch, 2008)
It is my hope that in putting these ideas out to the world, others can contribute their own thoughts, experiences, observations, and research. It is my hope that, in writing and sharing my ideas, awareness is brought to the fact that what these intense kids need most is to feel safe, accepted, and loved. Many of the strategies that we find to be effective with neurotypical children can be harmful to these intense kids. Strategies, like time outs and implementation of consequences, can only further contribute to these children feeling scared and misunderstood. The name of the game with these kids is knowing when and how to utilize the hammer (setting and adhering to limits when necessary), but most often utilizing the hug (calming, soothing, comforting). The most vital piece of responding and relating to these kids is the importance of parents being able to control their own responses in the midst of these challenging episodes. This is no easy task, but it is the most impactful thing we can do. Children develop an increased neuroception of safety by 1. Being able to set us up to feel all of these scary and overwhelming things, and by 2. Being able to watch as we regulate and stay calm in the midst of all they are setting us up to feel. This not only helps their brain to start to integrate and develop in a more healthy way, but it also helps the relationship between parent and child, which contributes to healthy attachment, positive self-regard, and feeling positively regarded by others. This is just the beginning. The tip of the iceberg.
I know this to be true because I have seen this approach work with many of the children I work with and their families. I have spoken with many other families that resonate with this conceptualization and approach. Families who confirm that this has been the only thing that has worked for their child and their relationships with their child. On a personal level, I have seen this approach be transformative for my son and for our family. It has been the only thing that has worked.
The implications of this hypothesis are huge. Not only in helping us understand and conceptualize these beautifully intense kids, but also in helping redefine their struggles for clinicians and for the field of mental health as a whole. This reconceptualization allows us to focus efforts on research and interventions that will help children and families heal and grow, versus providing them with a negative, and even harmful label. Words hold great power, and words like “oppositional” and “defiant” make us think negatively of those they are used to describe. These words also lead us towards heavy handed consequences, unnecessary limit setting, and behavioral modifications that are detrimental for these kids and the familial relationships.
My hope for the implications of re-conceptualizing the diagnosis of ODD and our understanding of these intense kids is as follows:
1. First and foremost, to help these children feel safe, seen, and accepted.
2. To help families feel the same, as well as empowered - with knowledge and tools that help and don’t harm.
3. For families and clinicians to help children increase self-awareness through safe and effective strategies, such as reflective responding and modeling.
4. For clinicians to be aware of and educated in how to intervene in the relationships between family members, with the goal of secure and healthy attachments.
5. For clinicians to increase their understanding of interventions that are helpful in rewiring the brain and promoting integration for these kids; multisensory interventions like play therapy, sandplay therapy, and art therapy, to name a few.
6. Finally, for the the diagnosis of ODD to be seen as a tragic misunderstanding of neurodiverse children. For us to see these children as struggling from a neurodevelopmental disorder versus a disorder of emotion and behavior alone. That we may have a more accurate representation of what is going on with these intense kids – one that goes beyond surface presentation and addresses etiology.
If you have a child like this, you may be reading this and feeling an all too familiar prickle of guilt. I can sense that you may be feeling this because, as a parent of a beautifully intense little boy, this is a feeling I have felt all too often myself. I have felt this guilt as I discuss these ideas with colleagues, friends, and family. I have felt this deeply when I look at my son. However guilt is an emotion that does not serve us well here. What we need is hope. And all that we know about the brain and attachment gives us so much hope! The brain can be rewired. The processes and structures of the brain can be changed in the direction of health and integration. There is much cause for hope and excitement here, as we come to a more accurate understanding of these beautifully intense children and their strong and resilient families.
I will end with a story. My son shared with me yesterday about his dream. He dreamt that he was like an octopus, orange, with arms coming from and reaching towards many different directions. He said I was a giant. That I was big enough that my chest and head were out of the water. I could see what was above. I could see the bigger picture. My hand was holding his, not in the typical way of hand holding, but like I was holding his hand up. Holding, supporting, and guiding all at the same time. It was like we were in this depth together. He could not see and was trusting me to see what was above and guide us in the right direction. This is what we as parents and clinicians can do for our children by re-conceptualizing the presentation of ODD. We can stop the tragic misunderstandings that lead to so many broken hearted children and families. We can heal the fractures within these children and within their relationships. We can shape these little brains and hearts towards integrated and whole experiences with relation to themselves and in relationship with others.
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