Imagine a family member has cancer, but no matter how many doctors you take them to, no one can correctly diagnose it. Some tell you they don’t even believe in cancer. Instead, your loved one racks up a long list of other diagnoses. Some of these explain a symptom or two, but none are accurate. The medications prescribed don’t help either. Will your loved one get the treatment they need without the correct diagnosis? Will they recover without the correct treatment?
The above example is fictional, but to families raising children suffering from serious impacts of early childhood trauma, it may sound all too familiar. It’s very hard for our children to get a correct diagnosis or correct treatment. And without that, our families continue to struggle.
Part of the issue lies with the definition of reactive attachment disorder in the Diagnostic and Statistical Manual of Mental Disorders, or DSM — the manual clinicians use to diagnose mental issues. Reactive attachment disorder first appeared in the DSM in 1980 to help clinicians recognize the impacts of early childhood trauma.
In the current fifth edition of the DSM-5, the criteria for reactive attachment disorder reads as follows:
A. A consistent pattern of inhibited, emotionally withdrawn behavior toward adult caregivers, manifested by both of the following: The child rarely or minimally seeks comfort when distressed; the child rarely or minimally responds to comfort when distressed.
B. A persistent social or emotional disturbance characterized by at least two of the following: minimal social and emotional responsiveness to others; limited positive affect; episodes of unexplained irritability, sadness, or fearfulness that are evident even during nonthreatening interactions with adult caregivers.
It’s very hard for our children to get a correct diagnosis or correct treatment. And without that, our families continue to struggle.
C. The child has experienced a pattern of extremes of insufficient care as evidenced by at least one of the following: social neglect or deprivation in the form of persistent lack of having basic emotional needs for comfort, stimulation, and affection met by caring adults; repeated changes of primary caregivers that limit opportunities to form stable attachments; rearing in unusual settings that severely limit opportunities to form selective attachments.
D. The care in Criterion C is presumed to be responsible for the disturbed behavior in Criterion A.
E. The criteria are not met for autism spectrum disorder.
F. The disturbance is evident before age 5 years.
G. The child has a developmental age of at least nine months. (Previously considered a subtype — Disinhibited Social Engagement Disorder — was added to the DSM in 2013 and is characterized by being overly familiar with unknown adults while not checking in with primary caregivers, among other things. The complete definition can be read here).
Those of us who have raised traumatized children can list many other symptoms not covered in the DSM criteria for reactive attachment disorder. It’s a narrow definition, and on top of that, many clinicians believe reactive attachment disorder is rare. While this may be true in the general population, it is not true in children from foster care or orphanages. Other clinicians believe that issues from childhood trauma can be better explained by a diagnosis like post-traumatic stress disorder (PTSD).
All this means the diagnosis of reactive attachment disorder is often missed. It also leads to many other, often wrong, diagnoses being added, like attention deficit hyperactivity disorder (ADHD). This takes us down the wrong paths, giving our children medication that doesn’t work and treatment that’s ineffective.
“Parents are frustrated because they seek so much help, and the diagnosis gets missed,” says Forrest Lien, a clinical social worker and trauma expert who developed specialized treatments for children with reactive attachment disorder and their families. “Every child with reactive attachment disorder I’ve seen over the years has been labeled with ADHD. Very few actually are. A traumatized child has trouble with impulsivity and focus, which are key symptoms of ADHD. The definition of reactive attachment disorder in the DSM doesn’t explain it well, and that’s why these other diagnoses come into play.”
Those of us who have raised traumatized children can list many other symptoms not covered in the DSM criteria for reactive attachment disorder. It’s a narrow definition, and on top of that, many clinicians believe reactive attachment disorder is rare.
Lien is the keynote speaker at the Navigating RAD experience, a biennial event for those parenting children with developmental trauma, to be held next from April 19-21, 2024 in San Antonio. There, Lien will present on “'Why Am I Feeling Crazy?': The Life of RAD Parenting.”
Many of us do feel "crazy" considering we, those raising the children, tend to be the only people who see the reality of our children's disorder, especially as its symptoms primarily show up in the privacy of our homes and in close relations with the child. We're desperate for professionals to understand what we're going through and to help our children and families.
An accurate definition could be one step in the right direction.
The push for a more accurate diagnosis for the impacts of early childhood trauma
In recent years, there’s been a push to add “developmental trauma disorder” to the DSM as a more encompassing diagnosis. Much of the work around developmental trauma disorder and the effort to include it in the DSM has been spearheaded by Dr. Bessel van der Kolk, famed psychiatrist and author of The Body Keeps the Score.
You can read the proposal by Dr. van der Kolk here. It includes —
Exposure: The child or adolescent has experienced or witnessed multiple or prolonged adverse events over a period of at least one year beginning in childhood or early adolescence.
All this means the diagnosis of reactive attachment disorder is often missed. It also leads to many other, often wrong, diagnoses being added, like attention deficit hyperactivity disorder (ADHD).
Affective and Physiological Dysregulation: The child exhibits impaired normative developmental competencies related to arousal regulation.
Attentional and Behavioral Dysregulation: The child exhibits impaired normative developmental competencies related to sustained attention, learning, or coping with stress.
Self and Relational Dysregulation: The child exhibits impaired normative developmental competencies in their sense of personal identity and involvement in relationships.
Posttraumatic Spectrum Symptoms: The child exhibits at least one symptom in at least two of the three PTSD symptom clusters.
Functional Impairment: The disturbance causes clinically significant distress or impairment (in at least two of the following areas of functioning: scholastic, familial, peer, legal, health, vocational).
“Complex developmental trauma has a lot to do with the neurological effects of trauma,” Lien explains. “That’s the anxiety brain, the brain that’s in the hyper-aroused state of fear from their early trauma experiences such as neglect and abuse.”
While our children with RAD may also be diagnosed with PTSD, that diagnosis is also limited. “The diagnosis of PTSD is not developmentally sensitive and does not adequately describe the effect of exposure to childhood trauma on the developing child,” writes Van der Kolk in the paper “Developmental Trauma Disorder.” “Because infants and children who experience multiple forms of abuse often experience developmental delays across a broad spectrum, including cognitive, language, motor, and socialization skills, they tend to display very complex disturbances, with a variety of different, often fluctuating, presentations.”
Nothing in the DSM currently describes the pervasive effects of trauma on child development. This is why our kids end up with a laundry list of other diagnoses and a handful of medications that may or may not provide some minor benefits. Of these comorbid diagnoses, Van der Kolk notes: “None of these do justice to the spectrum of problems of traumatized children, and none provide guidelines on what is needed for effective prevention and intervention. By relegating the full spectrum of trauma-related problems to seemingly unrelated ‘comorbid’ conditions, fundamental trauma-related disturbances may be lost to scientific investigation, and clinicians may run the risk of applying treatment approaches that are not helpful.”
Many of us do feel "crazy" considering we, those raising the children, tend to be the only people who see the reality of our children's disorder, especially as its symptoms primarily show up in the privacy of our homes and in close relations with the child.
Developmental trauma disorder (DTD) goes beyond PTSD or RAD to cover the range of impaired development and psychopathological symptoms. “DTD is a more multifaceted [than PTSD] diagnosis specific to children, encompassing 15 possible symptoms across several domains, including emotion, cognition, behavior, and relationships,” explains Zara Abrams in the American Psychological Association article “Improved treatment for developmental trauma.” In the same article, clinical psychologist Margaret Blaustein, founder and director of the Center for Trauma Training in Needham,
Massachusetts, notes: “Diagnosis matters, because it drives what treatments are approved and covered by insurance, as well as what researchers are discussing and studying.”
In addition to being a more encompassing diagnosis, developmental trauma disorder also comes with effective treatments, which you can read about in The Body Keeps the Score.
There is great hope that developmental trauma disorder will make it into a future edition of the DSM, as Van der Kolk and others have continued to gather research on the condition. In turn, there is hope that this more encompassing diagnosis will lead to better treatment and outcomes for our traumatized children.
As executive director of RAD Advocates, a nonprofit that advocates beside and behalf of parents raising traumatized children, Amy VanTine appreciates the quest for a better definition of the diagnosis. But, in the meantime, they are not sitting still.
"We have a long way to go in our society in supporting families raising children impacted by early childhood trauma. Yet, we remain hopeful when we band together and put one foot in front of the other," says VanTine. "No matter what we call it, our focus at RAD Advocates is to educate and advocate so that people can better understand what families are experiencing and to help families secure help for wherever they are along the journey."
While we anticipate progress at the clinical level, we as parents must move forward. We can find leverage in educating ourselves and the providers our children see, no matter what we choose to call the very real struggle that impacts our families every day.
About the Author:
Micaela Myers and her husband adopted a pair of siblings from foster care in 2015, when the children were 9 and 13. Since then, she has become an advocate for foster care reform and the support and education of adoptive parents. She was a member and is a supporter of RAD Advocates. Micaela earned her MFA in writing from Vermont College of Fine Arts and works as a professional writer and editor in Colorado.