When Julie* adopted three young children nearly 20 years ago, she knew that they had fetal alcohol spectrum disorders (FASD) and had been removed from their biological parents after undergoing extreme emotional, physical and sexual abuse, but otherwise she was told very little about their backgrounds.
Julie already had a 14-year-old son from a previous marriage when she was given custody of the three siblings, ages two, three and four. She set out to create a safe and nurturing home for the children, and those early days were full of hugging and reading storybooks together. She slept in the hallway every night in case they needed her. But the first hints that creating a family might not be so simple appeared quickly as the magnitude of the children’s challenges became clear.
Over time, as her children opened up, the two eldest girls explained that they had been kept in cages by their foster parents and their baby brother had been hit when he cried. Case workers also indicated that their biological parents, who had addiction and mental health issues, had always kept their family on the move. Sometimes, when Julie would go into the girls’ room early to wake them up, they would already be dressed in many layers of clothes—as if they were ready to leave at a moment’s notice.
It wasn’t until a decade later that Julie learned that there was a term to describe the way her kids were being haunted by their early years: developmental trauma disorder. She learned about it somewhat accidentally while working in an early psychosis unit at the Canadian Mental Health Association. Through her research, Julie discovered that developmental trauma occurs when significant adverse experiences have an impact on the physical development of a child’s brain, particularly in the first three years of their life, and have lasting effects on their self-concept, relationship-building skills and behaviour.
What is developmental trauma disorder?
The term “developmental trauma disorder” was first coined in 2005 by US psychiatrist and neuroscientist Bessel van der Kolk and a group of fellow researchers who specialize in childhood trauma. It was established after a study of 20,000 kids found that children who experience early neglect or abuse are more likely to experience behavioural problems, substance abuse and negative health outcomes later in life.
“This isn’t about an event; it’s about the context in which people develop,” says Van der Kolk, who noted that most trauma in children is inflicted by their own caregivers. In his 2005 paper, he points out that young children learn to regulate their behaviour based on their caregivers’ responses to them—a process that has an impact on both neural development and social interaction. Those earliest patterns of attachment can shape information processing and perception throughout life.
Though developmental trauma disorder has not yet been recognized as an official diagnosis, a group of advocates in Ontario is working to spread awareness about the issue. Collectively known as the Developmental Trauma Action Alliance (DTAA), this coalition of parents, medical professionals and adoption specialists has hosted panel discussions across the province in hopes that it will bring legitimacy to the disorder and increase access to funding.
How does developmental trauma affect the brain?
While the early years of a child’s life often feel like utter chaos to parents, they actually reflect an intense and critical process of stabilization and self-regulation. If a child is in good care, their brain is able to develop the neural circuitry that facilitates developmentally appropriate emotions and regulation. If a child is in an environment of prolonged stress, the neural circuitry that develops facilitates survival using a fight-flight-freeze response, says Sian Phillips, a psychologist in Kingston, Ontario, who specializes in relational trauma and attachment difficulties. Usually, a child learns to trust their parents—and, by extension, others—during that crucial period. Children thrive on safety, nurturance and predictability, all delivered at the hands of loving and accessible caregivers. But in cases of neglect or abuse, where a caregiver is unreliable or even punitive, it affects everything about a child’s development.
Phillips explains that children are designed to be cared for. With caregivers looking out for any danger, the child can get on with the business of typical development. But once a child is chronically afraid, his developing brain changes its trajectory.
The amygdala—the part of the brain that alerts the body to danger—begins to develop in the womb during the last trimester. But when children experience abuse or neglect while the brain is still developing, the amygdala sends a message to the brain to focus on building circuitry that drives a fight-flight-freeze response at the expense of developing other brain functions.
“The amygdala helps sculpt the brain to be able to survive in that environment,” says Phillips. “For kids with developmental trauma, it’s as though a fire alarm is always on. It means that it’s incredibly difficult to learn or talk through things because your brain is constantly telling you ‘There’s a fire, there’s a fire.’ You often get kids who go into care with very lovely parents who offer them safety, but the kids can’t see it. They anticipate that people will be hurtful and are not able to learn something new.”
Sharon,* a foster parent for more than 30 years, says that all of the approximately 100 children who have come through her home have experienced trauma, and many have symptoms of developmental trauma. Sharon has an eight-year-old girl named Lucy* in her care who experienced extreme sexual abuse in her early years. She remains so terrified of her birth family that she refuses to put her name on any artwork at school because she is worried about her birth parents finding her. For the first couple of years, after she came into Sharon’s care at age five, she behaved in an aggressively sexual manner with both adults and children, offering oral sex as a kind of currency and viewing relationships as largely transactional. “It’s just what she knows and what she’s used to,” says Sharon.
Sharon says that forming a bond with Lucy has been challenging. “We have people come over to the house and she’ll ask if she can live with them next,” says Sharon. “I think she feels safe, but I also think that if you picked her up and moved her tomorrow, she wouldn’t really mourn that loss.”
It might seem like all these kids need is love to help them view relationships in healthier ways. But Charlie Menendez, a psychologist in Peterborough, Ontario, describes children who have been affected by developmental trauma as “triggered by love.” In other words, while they clearly need connection, love and a sense of security because they have been taught that those things are dangerous, their first reaction is to push them away.
Lucy, for one, craves affection but quickly shuts down in the face of emotional intimacy, like when her foster home starts to feel a little too much like a family. Just before a recent family trip to Walt Disney World, Lucy’s behaviour took a nosedive. Sharon says that Lucy acts out, doing anything she perceives might make her unlikeable, even unlovable. She steals toys from other children, lies and even hides bowel movements. “These kids want to be close, but they have huge trust issues because adults never kept them safe,” says Sharon.
Getting a diagnosis
Parents of children who have developmental trauma might not yet be familiar with the term, but many are well acquainted with a number of other supplementary diagnoses, including attention-deficit hyperactivity disorder (ADHD), oppositional defiant disorder (ODD), post-traumatic stress disorder (PTSD) and reactive attachment disorder (RAD). But Van der Kolk says these diagnoses fail to capture what’s really going on with these kids. When Menendez assesses a child that he concludes has developmental trauma, he sometimes diagnoses other recognized disorders that they qualify for to help them get access to mental health services.
Julie’s younger daughter, Tara,* is now 21, and she still struggles with emotional self-regulation and bouts of psychosis. “There isn’t a diagnosis known to the DSM that kid hasn’t had,” says Julie. “I stopped counting because, at one point, there were 16 distinct psychiatric diagnoses.” Tara struggles with low IQ, and she has been on antipsychotics and anti-anxiety medications since she was five. As a teen, Tara acted out more and more violently. When she was 15, Julie surrendered her to the Children’s Aid Society to have her moved into a group home. Even with Julie’s awareness of developmental trauma, there was no clear path to resources for her children.
Tara continues to live in a group home with professional caregivers where physical contact is prohibited. A therapist told Julie that Tara sometimes acts out just to be placed in restraints and satisfy her need for touch.
Helping kids deal with developmental trauma
In cases where developmental trauma is identified and kids get proper treatment, they can learn to connect with people in healthier ways, and access to key resources can make a difference.
Kathy Soden, manager of the Permanency and Adoption Competency Training (PACT) Program for the Adoption Council of Ontario, says these kids can be pigeonholed as having behavioural challenges, particularly in the classroom, where resources are limited, attention is divided and a disruptive child is simply labelled as a problem. Phillips says that kids who have experienced developmental trauma often have difficulties at school because they are locked in a fight-flight-freeze response but need to use advanced brain functioning, such as sitting still, listening to the teacher and picking up social cues. “The most important thing is safety and predictability,” says Van der Kolk. “These kids need to know what is going to happen next.”
Phillips presently oversees two small trauma-oriented classrooms in Kingston, alongside teachers and support workers, where they use an approach called dyadic developmental practice (DDP), including the PACE strategy, which involves playfulness, acceptance, curiosity and empathy. “Those four ingredients are signals of safety,” says Phillips. By gradually building a sense of safety and offering more positive narratives through storytelling (for example, directly challenging the idea that love is painful or that people deserve the bad things that happen to them), Phillips tries to help these kids turn down the fire alarm that’s been ringing for years and eventually have it under their control. It can go on and off as it was designed to do, but not all the time.
These therapies involve a lot of remedial elements, such as outdoor playing and storytelling, and include books that explore relevant ideas, such as creating dependence on people you can trust and learning to like yourself. Academic learning is postponed until children have made sufficient progress at feeling safe and are settled and ready to absorb more-conventional teaching methods. Students typically attend the program for two years and are supported in their home schools for an additional six months.
After just one year, Phillips typically sees significant improvements in executive functioning, including the ability to problem-solve, self-regulate and manage social relationships. “We see kids being invited to birthday parties and sleepovers for the first time,” says Phillips. “They learn to work through conflicts and understand that relationships can endure disagreements.”
When trauma goes untreated
If trauma goes unresolved, children can have continued struggles in their interpersonal relationships, even as they grow up and have their own families, and they may have interactions with the criminal justice system. Sylvia Gibbons, a parent liaison with the Adoption Council of Ontario, offers training to lawyers and judges about developmental trauma. “You look at this little kid and you want to help,” says Gibbons. “But if she doesn’t get help, she becomes the person who appears in court and then we want to punish her. If she still doesn’t get help, she becomes the parent she had and the cycle continues.”
Julie’s kids are now in their early 20s, and she is still learning about developmental trauma. When she recently attended a program for parents with children who have experienced developmental trauma, she found herself near tears being surrounded by parents who have struggled with similar issues in their families. “It was the first time I heard that I wasn’t alone in this kind of parenting,” says Julie, “but there was also sadness because my kids are grown now and we could have come out of it better if we had more information.”
Julie wishes she had the chance to find the right support to help her better understand and respond to her children’s needs. Looking back, she would’ve wanted to adjust her expectations around the view that they weren’t simply testing boundaries but fighting for their lives. “I went into it with the idea that loving them so much would fix them,” she says, “but it wasn’t enough.”
Tara continues to need a lot of support, while Julie’s other two adoptive children live independently, despite their struggles. Julie has never fully bonded with her eldest daughter, who mostly gets in touch now when she needs money. Her son was recently admitted to college, but he hasn’t been able to secure the academic and personal resources he needs to overcome challenges, like help with time management.
There is hope that, with greater awareness and dedicated resources, a new generation of children will be able to heal some of the worst wounds associated with developmental trauma. Lucy started attending one of Phillips’ classes in Kingston, and Sharon says her progress has been significant. “The old school used to call us every day to pick her up, but she just loves this program,” she says.
When Lucy acts out, Sharon tries to focus on “I wonder” exercises, a non-confrontational method recommended by Phillips to help Lucy recognize that her needs and feelings are important. “I might say ‘I can see that you’re struggling to get along with everyone and I wonder if it’s because today was a hard day for you,’” says Sharon. “She won’t answer, but I can see it in her face. It lets her know that I understand.”
Phillips adds that the act of “wondering” together encourages the building of reflection and engagement. “It doesn’t matter if we are right or wrong in our wonderments because it’s the process of staying engaged and wanting to know about their experience that is therapeutic,” she says. “It helps integrate brain regions that will later knit together to help them be curious or be better at self-regulating. If a child says ‘I don’t know,’ it stops the conversation. ‘I wonder’ lets us keep going.”
*Names have been changed.