Positive Approaches Journal, Volume 13, Issue 1

Volume 13 ► Issue 1 ► June 2024

Bridging Theory to Practice: Trauma Proficient Services for Youth with Autism and Developmental Disabilities

Kimberly Blair, Teri Pentz, Alonzo Alston, and Tara Pavlocak

Children with intellectual and developmental disabilities (IDD) are more likely to experience trauma than neurotypical children. ¹ This higher prevalence is due to several risk factors including but not limited to: communication and language barriers, behaviors that can be mistakenly attributed to their disability rather than a traumatic experience, more frequently needing medical procedures or hospitalizations resulting in medical trauma, and the frequent need for multiple caregivers across multiple settings (increasing the risk of trauma from exploitation). ² They are also more likely to experience bullying and rejection by peers in schools, communities, and on social media. ³ 

Despite these individuals being more vulnerable and at higher risk, youth with IDD and their families may find it difficult to obtain trauma treatment. Mental health services and IDD services are typically provided through siloed systems of care, presenting a barrier to receiving trauma-informed care within either system. Additionally, providers in the mental health system are often hesitant to engage in trauma therapy with this population, often lacking the necessary expertise and possibly even being unaware that children with IDD can benefit from this type of care.³ Existing trauma therapies can be just as effective with children with IDD as it is with children without – by providing good quality, person-centered treatment in a way that appreciates their unique abilities, strengths, hopes, and goals. 

The National Child Traumatic Stress Network (NCTSN) provides a wealth of resources for clinicians, service providers, and caregivers on the impact of childhood trauma and available interventions for children and adolescents who have experienced trauma. For practitioners who need additional resources, information is available about how to adapt existing trauma treatments for children with IDD, as many of these evidence-based treatments can be effective with modifications to standard protocols. These recommendations include the types of adaptations appropriate for all children in various contexts. For example, adaptation may include adjusting the length, frequency, and pace of content in treatment sessions; significantly involving parents and other caregivers into treatment sessions; adjusting content to meet the needs of the child by breaking information into smaller chunks, simplifying information, or engaging in frequent repetition of key concepts; and using accommodations effective for the child in other contexts, such as frequent movement breaks, reinforcers, or rewards. ³ Despite the demonstrated need for access to trauma therapy, families with children who have IDD continue to struggle to find quality care. As described above, there are many reasons why finding trauma-proficient therapists to serve this population can be a challenge. 

For decades, young children and families have sought treatment from the Matilda Theiss behavioral health programs at UPMC Western Psychiatric Institute and Clinic (now UPMC Western Psychiatric Hospital). In 2012, the University of Pittsburgh Department of Psychiatry was awarded a federal grant from the Substance Abuse and Mental Health Services Administration (SAMHSA). With this grant, UPMC and the University of Pittsburgh became     part of the National Child Traumatic Stress Network (NCTSN) and implemented evidence-based treatment options through their outpatient program for children and families who have experienced trauma. Since the initial grant (2012-2016), two more rounds of funding were awarded, which allowed the programming to grow and evolve into what is now the Theiss Center for Child and Adolescent Trauma. Over the years, the program has attempted to provide high quality trauma therapy to all children who have experienced significant trauma and has engaged children with and without intellectual and developmental disabilities. 

A Case Example

The following is a case example illustrating how Theiss has successfully provided trauma treatment for a child with autism and comorbid mental health issues. 

Levi is a 17-year-old male referred by his residential program to the Theiss Center for Child and Adolescent Trauma at UPMC Western Behavioral Health for outpatient trauma therapy. Levi had a long history of trauma, including the death of his father from community violence and the death of his grandmother due to an overdose – all while he was still a toddler. Levi lived with his biological mother and her boyfriend until seven years of age, where he experienced severe neglect, physical abuse, and suspected sexual abuse. He was removed from this home at age seven and placed with his paternal grandmother. However, he was returned to his biological mother’s care several times before being permanently placed with his grandmother at age 11. While living with his grandmother, Levi exhibited extreme physical aggression, rage, and extensive property destruction, resulting in multiple hospital and residential placements throughout his adolescence.

Since the time of referral, Levi has resided within a specialized residential program for children and adolescents with complex needs. Staff members from this program contacted Theiss after attending a virtual training on child trauma, not only referring Levi for therapy, but also seeking additional training and consultation to support him in the residential setting given his extensive trauma history.   

Prior to his initial evaluation for services, Levi received a variety of diagnoses including Autism Spectrum Disorder, Intellectual Disability, Disruptive Mood Dysregulation Disorder, Post Traumatic Stress Disorder, Intermittent Explosive Disorder, and Reactive Attachment Disorder. He continued to exhibit rage, physical aggression, and property destruction within this residential placement. This behavior necessitated the need for two staff to accompany him for most of the day. These staff members felt it was unsafe to transport Levi into the community due to aggression and elopement concerns. Staff communicated that Levi wanted to talk about his painful early experiences and that he was requesting the support of a therapist. Therefore, after extensive safety planning, Levi began treatment in-person at the outpatient clinic. 

When he began trauma treatment, the initial focus was establishing rapport and providing Levi with a safe space to talk. The therapist focused on ways that Levi could communicate his wants, needs, and feelings without resorting to aggression. The therapist also provided Levi with feeling words and helped him identify nonverbal signals that he could utilize to label what he was feeling. They also worked on identifying Levi’s triggers and helping him connect these feelings with his past trauma experiences. During the early days of Levi’s treatment, both the therapist and the trauma consultant have maintained contact with the residential staff who support him, helping them to establish a “safe space” in his home. They helped Levi learn how to let staff know when he is becoming dysregulated and how to utilize the space, ultimately preventing him from having to resort to aggression. These strategies were very effective, particularly early in treatment when Levi was still having difficulty putting his emotions and pain into words. The therapist further supported the residential staff by helping them understand all the ways that Levi was trying to communicate with them. Later in treatment, the therapist began working with Levi to talk about his future dreams and how he could move toward these goals, while working with residential staff and Levi to focus on more than just behaviors and consequences – including processing early trauma and understanding how his early experiences have impacted Levi emotionally.

Throughout treatment, the therapist also adjusted the more typical treatment strategies as needed, taking into consideration the following:

Initially, one of the residential staff attended all of Levi’s therapy sessions to help him feel comfortable. Gradually, as Levi and his therapist developed rapport and Levi was feeling safe, the residential staff member was more frequently able to step back and allow the therapist and Levi to meet alone.

A year since initial referral, Levi continues to participate in trauma therapy at Theiss. His incidents of aggression have greatly declined, and he is beginning to move toward increased time in the community with reduced levels of support. Levi’s ultimate goal is to transition out of residential placement into his own home with minimal support. As everyone recognizes that success is not a “straight line” process, the therapist and residential staff continue to maintain open communication and adjust treatment strategies as needed and at Levi’s own pace, in order to support his progress. Levi’s success has been largely due to the collaborative work between the trauma therapist and the care providers, all becoming much more skilled in applying our knowledge of early trauma to Levi’s day-to-day needs.

Trauma-Proficient IDD Services

Professional development opportunities about trauma and the impact of those traumatic experiences on the mental health of children and adolescents are becoming increasingly accessible. Few professionals working with children today would reject the notion that trauma can have a profound impact on development and behavioral health outcomes. However, there is significant variation in how being trauma-informed impacts the day-to-day work of teachers, therapists, caseworkers, etc. It is therefore important to move beyond trauma-informed care, to trauma-proficient care. This demands a different type of training, one that moves from providing information to caregivers to the application of knowledge about trauma to everyday practice. 

The Theiss Center for Child and Adolescent Trauma not only supports the implementation of evidence-based treatment within UPMC’s child and adolescent trauma specialty outpatient clinic, but it also provides a mechanism through which child and adolescent clinicians may become trauma proficient, not just trauma informed. This mission is supported through training UPMC clinicians and graduate students in evidence-based treatments for trauma, as well as by offering professional development opportunities that provide practical, practice-oriented information, and a mechanism through which to assist programs in becoming trauma proficient in the work they do with traumatized children and families. 

The Theiss Training Center was established to develop and deliver professional development programs that better equip professionals to provide services to children and adolescents with trauma histories across the UPMC Western Behavioral Health Network and beyond. The inaugural offering of the Theiss Training Center is a child trauma curriculum that provides a framework for use by clinicians and programs across target populations, clinical specialties, and levels of care. This curriculum begins with foundational general concepts in trauma and child development and moves toward integration into practice, focusing upon training tailored to individual clinic/population needs. Ideally, participants are encouraged to progress in sequence through the components to achieve the best training outcomes. Overall, the curriculum helps participants understand how early traumatic events can impact the emotional and behavioral functioning of children with a variety of clinical presentations and treatment needs. More specifically, the Theiss child trauma curriculum includes the following components.

Biography

Contact Information

Kimberly Blair: blairka@upmc.edu

Tara Pavlocak: pavlocakta@upmc.edu

Teri Pentz: pentzt@upmc.edu

Alonzo Alston: alstonal@upmc.edu