Amy VanTine began parenting a child with reactive attachment disorder/developmental trauma disorder in 2013. After seeing first-hand the severe lack of understanding and support for families dealing with these disorders, she founded RAD Advocates with three other moms in 2017.
While the pace of change is too slow for VanTine's liking, looking at the diagnosis and treatment for individuals and families dealing with schizophrenia and autism shows that understanding, treatment and support can change dramatically over time.
The history of schizophrenia in relation to developmental trauma
The term schizophrenia was originally coined in 1900. It’s often characterized by hallucinations, delusions and disorganized thinking/behavior. Schizophrenia first entered the Diagnostic and Statistical Manual of Mental Disorders (DSM) in the 1950s and was expanded into five subtypes in the early 1980s.
“As late as the1950s, they still believed schizophrenia to be a parenting problem,” VanTine explains.
This sounds all too familiar to us. While our children may have developed developmental trauma disorder/reactive attachment disorder from early separations, inconsistent caregiving or abuse, once they come to us, our loving and consistent parenting alone will not cure them.
Those of us who adopted often feel blamed for our child’s issues rather than supported. I constantly had our adopted children’s therapist giving me these messages and telling me to just be more lenient, for example.
“Yes, there are parenting strategies that can help, but the cornerstone of developmental trauma disorder is trauma," VanTine explains. “We need to focus our energy on supporting families and developing resources for the disorder, not pointing fingers at parents.”
In the past, mothers of those diagnosed with schizophrenia were also blamed.
In the Psychology Today article “No, Schizophrenia Isn't Caused by Bad Parenting,” Justin Garson, Ph.D., writes: “In the 1940s and 1950s, schizophrenia was always considered to be the mother’s fault. Clinicians such as Frieda Fromm-Reichmann and Harry Stack Sullivan saw schizophrenia as a flight from the pain of ‘maternal rejection.’”
Furthermore, the article notes that the study of human development can lead to a “blame-game” that disproportionately targets women. It concludes by saying “the key isn’t more shame and blame, but counseling and education.”
Nowadays, schizophrenia like many mental health issues, is seen as having complex origins — combinations of nature/genetics and environmental factors. While there is still no “cure,” schizophrenia can be managed with a treatment and support team.
A few years ago, I approached the psychology faculty at the university where I work to see if they’d be open to having a workshop on reactive attachment disorder on campus, that I would fund. They were hostile toward the very mention of reactive attachment disorder, saying it unfairly labeled the child and was pointless since there was no cure. I left crestfallen at how my colleagues wouldn’t even listen to me — a parent dealing with these issues directly.
“Yes, there are parenting strategies that can help, but the cornerstone of developmental trauma disorder is trauma," VanTine explains. “We need to focus our energy on supporting families and developing resources for the disorder, not pointing fingers at parents.”
I thought of the many other mental health issues that have no cure but can now be largely managed thanks to correct diagnoses, medication and support — things that seem like a desert mirage to those of us in the trenches of reactive attachment disorder/developmental trauma disorder.
Think about this fact, according to WebMD: 50% of people with schizophrenia recover or improve to the point they can work and live on their own, and an additional 25% are better but need help from a strong support network. This is thanks to treatments evolving from sedation and shock therapy to targeted antipsychotic medications, individual and family therapy, and vocational rehab and social skills training.
Most of us parenting children with reactive attachment disorder/developmental trauma disorder would love to see a clear treatment path and improvement statistics like that. But effective treatments seem far away when developmental trauma disorder isn’t even in the DSM yet, and the definition for reactive attachment disorder is severely limiting.
The history of autism in relation to developmental trauma
The autism diagnosis has also seen a long and winding path. The term was coined by Eugen Bleuler, the same Swiss psychiatrist that first used the term schizophrenia. In fact, autism originally appeared in the DSM in connection with schizophrenic reactions in young children in 1952. It didn’t get its own separate entry until 1980. Autism spectrum disorder entered the DSM in 2013.
As it became more recognized, the diagnosis rate went through the roof. The Scientific American article “The Real Reasons Autism Rates Are Up in the U.S.” by Jessica Wright notes that in 1966, researchers estimated 1 in 2,500 children had autism. Today, the Centers for Disease Control (CDC) estimates 1 in 68 children have autism. “How people think about and diagnose autism has changed substantially since the diagnosis was first introduced nearly 75 years ago,” the article notes. It adds that policy changes also played a role, with the American Academy of Pediatrics recommending in 2006 that all children between 18-24 months be screened. An early and accurate diagnosis gives children greater excess to specialized services.
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If developmental trauma disorder were in the DSM and children with trauma were screened for it, we would certainly see a similar rise in the diagnosis, leading to research, new treatments and increased support for families.
“It’s astonishing how common autism is now,” VanTine says. “It’s not a parent blame game with autism either. Meanwhile, families dealing with reactive attachment disorder/developmental trauma disorder are still left out in the dark because of the way the disorder presents.”
Instead of being seen for what it is — developmental trauma disorder — our kids get a laundry list of other diagnoses, and we get judged for our parenting. Imagine a day when developmental trauma disorder is seen as clearly as autism, and there are as many specialized treatments and programs available.
While a child with nonverbal autism is nonverbal everywhere, children with developmental trauma disorder often only show their most severe behaviors to their primary caregiver.
“We, as a society, don’t hear what these parents are saying, and that's where I get frustrated,” VanTine says. “We all have different stories of how our children came to us or what our children's trauma was, but they all have similar characteristics, issues and behaviors.”
Instead of being seen for what it is — developmental trauma disorder — our kids get a laundry list of other diagnoses, and we get judged for our parenting. Imagine a day when developmental trauma disorder is seen as clearly as autism, and there are as many specialized treatments and programs available.
“There’s not enough awareness, and that's why RAD Advocates exists: to try to bridge that gap between what parents are experiencing in the home and what the professionals don’t see in their offices,” VanTine says.
The future of developmental trauma disorder
We already know that Adverse Childhood Experiences (ACEs) are common and costly, as evidenced by a large-scale study of 17,000 individuals in the mid-1990s. You could even say childhood trauma is our biggest national health issue. The ACEs study found a direct link between childhood trauma and adult onset of chronic disease, incarceration and employment challenges, among other things.
The CDC states: “About 64% of adults in the United States reported they had experienced at least one type of ACE before age 18. Nearly one in six (17.3%) adults reported they had experienced four or more types of ACEs. … Preventing ACEs could potentially reduce many health conditions. Estimates show up to 1.9 million heart disease cases and 21 million depression cases potentially could have been avoided by preventing ACEs. … ACE-related health consequences cost an estimated economic burden of $748 billion annually in Bermuda, Canada and the United States.”
We also already know that brain development is at a critical stage between birth and age 3, when children form 1 million neural connections per second. Similarly, during this time, nourishing relationships are key for lifelong health and wellbeing.
All this knowledge means we should know that childhood trauma is a major issue, developmental trauma disorder is very prevalent in our society, and we need targeted treatments, support and intervention.
“There’s not enough awareness, and that's why RAD Advocates exists: to try to bridge that gap between what parents are experiencing in the home and what the professionals don’t see in their offices,” VanTine says.
VanTine hopes for a day when developmental trauma disorder has the same recognition and treatment options we now see for things like schizophrenia and autism. “It's interesting to see how much more awareness there is for autism versus developmental trauma when I advocate for families," VanTine comments. "There are so many more resources now for autism that professionals often want to clump RAD/developmental trauma with autism,” VanTine comments.
However, treatment designed for autism usually doesn’t meet the needs of our traumatized children.
“It goes back to that awareness and education necessary for professionals. As they became more educated on autism, they created programs that aligned,” VanTine says. “We could be so much further with developmental trauma disorder if there was just cooperation and a willingness to say, ‘Let's collaborate with healthy parents. Let's do studies. Let's spend the money to understand developmental trauma.’”
Progress is slow, but we are progressing. Organizations like RAD Advocates give hope. The history of other brain-related disorders can provide hope too. It will take time, but change is possible.
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