Unrecognized Trauma is Endemic

In 2015, the Hogg Foundation published When Disability is a Disguise, a guide to understanding why the mental health needs of individuals with intellectual and developmental disabilities (IDD) are overlooked or ignored, in large part because disabilities often overshadow mental health conditions. The report called for looking at IDD through a trauma-informed lens.

A continued topic of discussion, we speak with Dr. Karyn Harvey who has decades of experience working with adults with IDD. She gives her perspective on what it would mean for both caregivers and the system as a whole to be more “trauma-informed.”

“I have seen so much bullying and so much trauma that comes from having a disability,” says Dr. Harvey, citing a 2012 Spectrum Institute study that interviewed individuals with IDD, of whom 70 percent said that they had been sexually, physically, or financially abused, and 90 percent said that abuse was ongoing. Only 37 percent reported the abuse for fear that nothing would be done.

Treatment that Worsens Trauma

Having been in the field for 30 years, Dr. Harvey says she’s seen psychologists approaching behavioral issues as, in her words, an “end to a means.” She admits to having been a part of this misunderstanding, where interventions are designed to encourage people to “get what they want” in a different way. For individuals with IDD, this approach fails because behavior is often an expression of emotion rather than a manipulative effort. In fact, this can make the trauma—and thus the behavior—worse.

Many individuals with IDD are minimally verbal or can’t express their emotions in an appropriate manner, but instead use the behavior to communicate their emotions.

“So many times I’ve witnessed situations were people were addressing the disability over the person, without realizing the situation they’re in and that they’re in a state of hyper arousal,” says Dr. Harvey, “When we focus on the IDD we miss the actual, emotional issue.”

Instead, Dr. Harvey asserts that psychologists should be looking at the root of behavioral issues, especially in cases of IDD.

Trauma and IDD – Focus on Recovery and Healing

Addressing unresolved trauma takes a lot of work, but the results are dramatic. “Now we’re seeing vast lessening of behavioral issues with a trauma-informed care approach,” says Dr. Harvey as she shares first-hand stories of patients who have been drastically misinterpreted by psychologists, including herself. She tells these stories of aggressive or destructive behaviors that were caused by horrible trauma and experiences of abuse.

Dr. Harvey commends the Road to Recovery Toolkit by the National Child Traumatic Stress Network, which was developed to support children with IDD who have experienced trauma. “It’s a real game-changer,” she says, “We need to raise awareness of professionals of this therapeutic-level approach. We have to look underneath the behavior.”

The ultimate goal is recovery, therapeutic healing, and the reduction of seclusion and restraint among individuals with mental illness and IDD.

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