Written By: Caroline Griffin Edited By: Caroline Garrett Date Published: October 1, 2021 Guest: Dr. Beth I. Barol: Ph.D., LSW, BCB, NADD-CC
We reached out to Dr. Beth I. Barol to discuss her studies and inspiring career in social work with a focus on person-centered and holistic approaches to the treatment of individuals with intellectual and developmental disabilities and challenging behaviors. In return, she gave us great insight into understanding root causes, how to offer personalized support, and how, as individuals and care providers, we can create positive change through compassion and continued education. Below is our discussion with Dr. Barol as well as supplemental research and resources to further the conversation.
Dr. Beth I. Barol is an innovator in the field of Social Work, most notably for her holistic, trauma-informed approach to supporting and treating individuals with intellectual and developmental differences (IDD). Dr. Barol utilizes specialties in Neurofeedback, Biofeedback, Positive Approaches, EMDR, and the Biographical Timeline to uncover and address the root causes of challenging behaviors that affect individuals with IDD.
For those of us not yet familiar with the abbreviations used in her studies, we asked Dr. Barol to explain the meaning behind the terminology, including IDD, EMDR, and “challenging behaviors”.
“Terminology in our field is changing quite a bit. IDD, when I use it, refers to Intellectually and Developmentally diverse people. I try to move away from thinking about disabilities as defining the person (Conventional language termed IDD with the word disability for the second D) and instead focus on how to support people to maximize their potential and joy in life.
EMDR translates to Eye Movement Desensitization and Reprocessing. It is a very useful trauma intervention discovered by Francine Shapiro in 1988."
Dr. Barol utilized EMDR in the study that led us to her work: Stepping Stones: EMDR Treatment of Individuals With Intellectual and Developmental Disabilities and Challenging Behavior. In this form of therapy, the participant is asked to recall specific and often distressing images related to the rooted trauma. They are then directed to participate in bilateral stimulation, such as side-to-side rapid eye movement or hand tapping. This process aims to retrain and repair the physical and emotional experience of the trauma, therefore decreasing its level of agitation in the participant’s life. One reason EMDR was chosen for Dr. Barol's study was its lack of reliance on verbal communication. Success within the study led to decreased levels of challenging behaviors in participants as a result of effective trauma reprocessing.
In 2012, researchers at Spectrum Institute conducted a study that interviewed individuals with IDD. The study revealed that 70 percent of participants had been physically, emotionally, or financially abused. 90 percent said the abuse was ongoing, and 37 percent said they did not report the abuse out of fear that nothing would be done.
Unlike the general population, many individuals with IDD are unable to use verbal language to communicate their personal needs or histories. In this case, they often express themselves through behaviors, emotions, gestures, and other body language.
Imagine stepping on a nail or witnessing a disturbing event, and being unable to verbally communicate that pain or talk to anyone about your experience. You would need to communicate your experience through behavior, emotion, body language, and sound. Imagine that despite your best efforts, no one tries to understand you, or they dismiss your behaviors and say they are because of your disability. Over time, you would become more frustrated. You might become agitated, irritable, and less able to cope. If others still don’t try to understand what’s going on for you, it might elicit judgment and misunderstanding instead of compassion and meeting your needs. If your unmet needs persist, understandably, so would your behaviors. With no one to understand your nonverbal language, your communication and behaviors could be labeled as challenging, and the response of others would be to try to make your behaviors align with their expectations. This example is meant to create a better understanding of how nonverbal communication in the IDD community is often dismissed. Behaviors meant to signal that something is wrong are instead labeled an inherent attribute of someone’s difference.
“When I think of challenging behaviors,” Dr. Barol explains. “ I think of behaviors people have that are not working for them (or the people in their lives) to help get their needs met. These behaviors, such as aggression, self-abuse, and property destruction, challenge us to figure out what the root causes of such behaviors are with the person and to help have their needs met more effectively, then giving up/not needing to rely on the challenging behaviors (to communicate their needs).”
This grand misinterpretation of language, in addition to under-informed approaches of care providers and physicians, results in traditional treatment methods focused on resolving the behavior instead of the emotional root cause. This approach causes further traumatization to those who truly need to be seen the most, heard, and treated by the means of personalized and holistic healing modalities and support plans.
Dr. Barol’s article on Positive Approaches further reviews advances in support knowledge and treatment over the past 20 years for working with individuals with intellectual differences and challenging behaviors:
In Revisiting the Positive Approaches Paradigm of Environment, Communication, Assessment, and Hanging in There, we explore the importance of continuing to focus on the compassionate education and training of the direct supporters to bring advances into the lives of people most in need of trauma-informed, person-centered supports. Dr. Barol offers the Biographical Timeline process as one approach that can help transform the helping relationships, coordinate available resources and supports, and thereby assure positive outcomes” (Barol, B. I. 2019).
While working as a live-in “house parent” at the beginning of her career, Dr. Barol began looking beyond traditional treatment methods when she noticed positive differences in her housemates after they received personalized support. “As a live-in houseparent in the 1970s, I found that by combining good nutrition, exercise, fun, and building a meaningful and rewarding lifestyle, the people I lived with did much better. My passion ever since has been working with people with challenging behaviors holistically.”
Dr. Beth I. Barol (Dr. Barol)
Caroline Griffin, Holistic Culture (HC)
HC: While researching Intellectual and Developmental Disabilities and Trauma Recovery I came across your study: Stepping Stones: EMDR Treatment of Individuals With Intellectual and Developmental Disabilities and Challenging Behavior. I was both fascinated and relieved to find research on such an important and often vastly overlooked aspect of mental health and wellbeing for this community. What led you to embark on this study and what were some key insights you gathered from this exploration?
Dr. Barol: I have been working on the behalf of people with intellectual differences for the past 45 years, I have been trying to find ways to help people without hurting them in the name of "treatment" which happens so often when the goal is just behavior management and containment. As a live-in houseparent in the 70's I found that by combining good nutrition, exercise, fun, as well as building a meaningful and rewarding lifestyle, people I lived with did much better. My passion ever since has been working with people with challenging behaviors holistically. Later when I was in a clinical consultant role in Pennsylvania, I met Andrew Seubert, who introduced me to EMDR. I found it to be very helpful in my practice, and thought it would be a good idea to do a study to help see if others experienced it as helpful and if so, then to try to spread the word in the field. We found it was indeed very helpful. I am still in touch with several of the participants who continue to talk about the benefits. What was particularly helpful seems to be the use of bi-lateral stimulation. This is especially exciting to me since so many people we support have communication differences and therefore have been excluded from therapies that rely on very communication. This work also led me to be curious about neuro-modulation therapies, such as neurofeedback and neuro-entrainment and I am very hopeful about those potentials, I have seen some promising results. But, everything works better when we also attend to having a healthy lifestyle and a supportive, non-triggering home and work environment.
HC: In your study, you reported making accommodations to the EMDR protocol for each individual based on their unique set of needs. What was that process like? How were you able to identify what modifications suited each participant best and how would you suggest others in the healthcare fields incorporate this method of unique understanding (or person-centered healing) into their daily practice?
Dr. Barol: I think the key is to get to know the person you are working with, what they like and are passionate about, and help them to employ their strengths and interests on their behalf. For example, I worked with a young man who was very resistant to therapy and would not engage in the preparatory stages in EMDR. After a few sessions of trying to win him over to working with me without success, I noticed that he had a Harry Potter book (book 3) in his school bag. I was able to relate our work to creating a patronus in the Harry Potter book and work from that metaphor to get him to engage. He was fully into our work from that moment on. Another person was very anxious, would scream and strike out and had few verbal skills. We tried to help her take calming deep breaths and were unsuccessful. We eventually tried lighting a birthday candle and having her blow it out from a greater and greater distance to help her take a deeper breath and that worked! We had her father do that with her every day, and that helped her calm down and sleep better. We also taught her parents to do bilateral tapping on her shoulders when she was overwhelmed and screaming, and that calmed her down. These are just some examples of taking the principles and tailoring them to the person.
HC: What roles have Neurofeedback and Biofeedback played in your work as treatment modalities? How do you hope to see these modalities develop in their application to this field in the future?
Dr. Barol: EMDR and the importance of bilateral stimulation led me down the path of looking at Biofeedback, Neurofeedback, and other forms of Neuromodulation. I find that the results are richer, either as stand-alone therapies or in conjunction with talking therapies. When possible I couple talking therapy as well for the sense of human connection and positive mirroring, which is so important, particularly with people who may not have a lot of warm connections outside of therapy yet. I find that focusing on calming or if needed, exciting the brain, gives the person a sense of ease and control over their own body and positions them to get more out of the talking therapies/interpersonal interaction. My goal is to make these interventions available to everyone. It is still relatively rare to see these very helpful interventions available for people with IDD, dual diagnosis, and challenging behaviors. In fact, many underserved populations in our society do not have access to these interventions. They mainly get prescribed medications, without the holistic lens.
HC: What is an area in your field that you feel is not being talked about enough right now and how can we bring it to the forefront of the conversation?
I found that people are not talking about a healthy body/healthy mind enough. We are still too focused on finding the right pill. We need to help people learn about taking care of themselves, make it an enjoyable hobby, done daily, and support people to be able to see their own improvement. People need to eat well, quit the over-dependence on junk food, walk or move or exercise in some way every day, sleep well, and pay attention to calming and supporting their brains. There are so many tools that are available now that weren't before that people can make inroads at home - if they know what to do and what to look for. We need to teach individuals and their supporters, family, friends, and staff to be able to do work at home.
HC: What aspect of your work excites you the most or brings you the most fulfillment?
Dr. Barol: I love working with people directly and helping their supporters build their ability to really meet people and help them live better lives. I also love doing biographical timelines, a long time passion of mine, helping people look at what a person has been through, what opportunities they missed, as well as what they liked in the past, to help understand the person better and target more effective lifestyles and interventions building on what they want and do well- coming from a place of compassion and understanding rather than reactivity and judgment.
HC: For those interested in learning more about this topic, what resources would you suggest they explore? Books, podcasts, websites, organizations, etc?
Dr. Barol: For bio and neuro feedback/neuro-entrainment, I think the Northeast Regional Biofeedback Society (NRBS) is doing interesting work. They hold a helpful conference each year and they are interested in supporting vulnerable people. https://staging.nrbs.org/.
Some of my favorite readings related to these topics include:
HC: Is there anything else you’d like to share with us today?
Dr. Barol: I come from the vantage point that most of the challenging behaviors we see have trauma at their roots. While the connection between trauma and challenges to mental health is becoming more widely known, it seems to be all over the media, it is still not being applied to folks with the most severe traumas and who are living the most difficult and painful lives; the poor, the oppressed and the undeserved. State-of-the-art technologies must be made available to these folx for them to have a chance of living meaningful and fulfilling lives. We need to all work together to address this from a micro level to a macro level. How can we effectively help people therapeutically if they have food insecurity? If we are really into health, we need to help everyone become physically and mentally healthy. Our society needs a lot of work. Thank you for your work with Holistic Culture, to help raise awareness on all levels.
Barol, B. I. (2019). Revisiting the fourfold positive approaches paradigm: Environment, communication, assessment, and hanging in there. Positive Approaches Journal 8(1), 13-26. Retrieved from: https://www.myodp.org/mod/book/view.php?id=24060&chapterid=25
Barol, B. I., & Seubert, A. (2010). Stepping stones: EMDR treatment of individuals with intellectual and developmental disabilities and challenging behavior. Journal of EMDR Practice and Research, 4(4), 156–169. https://doi.org/10.1891/1933-3220.127.116.11