Supporting Vulnerable Individuals with Post Traumatic Stress Disorder Using Positive Systems Approach

Post-Traumatic Stress Disorder (PTSD) is a mental health condition that can affect anyone who has experienced or witnessed a traumatic event. However, in neurodivergent individuals and those with developmental disabilities, PTSD often remains underdiagnosed and undertreated. This oversight can be attributed to atypical symptom presentations and diagnostic challenges within this population. Implementing a Positive Systems Approach (PSA), as detailed in "Managing Disruptive Behaviour with a Positive Systems Approach" by Dr. Bob Carey and Terry Kirkpatrick, offers an effective framework for addressing PTSD in these individuals.

Prevalence of PTSD in Neurodivergent and Developmentally Disabled Populations

Research indicates that autistic individuals are more likely to report symptoms of PTSD compared to the general population. Studies have found that rates of probable PTSD in autistic people range from 32% to 45%, significantly higher than the 4% to 4.5% observed in the general population (autism.org.uk). 

Similarly, individuals with intellectual disabilities (ID) are susceptible to PTSD, though exact prevalence rates are challenging to determine due to diagnostic complexities (pubmed.ncbi.nlm.nih.gov).  In over 40 years of practice in this field, it is my experience that many individuals who are neurodivergent or who have other developmental disabilities carry around with them the effects of having experienced multiple traumas in their lives.  This usually involves combinations of physical, sexual or psychological abuse, bullying, or severe neglect. 

Challenges in Identifying PTSD in Neurodivergent and Developmentally Disabled Individuals

Diagnosing PTSD in neurodivergent and developmentally disabled individuals presents unique challenges:

• Atypical Symptom Expression: Traditional PTSD symptoms may manifest differently. For instance, instead of verbalizing distress, an individual might exhibit increased aggression, self-injury, or developmental regression

• Communication Barriers: Limited verbal abilities can hinder individuals from articulating their traumatic experiences or associated feelings, leading to underreporting of symptoms. 

• Diagnostic Overshadowing: Symptoms of PTSD may be misattributed to the individual's primary diagnosis, such as autism or intellectual disability, resulting in missed or incorrect diagnoses. 

Treatment Approaches for PTSD in This Population

Addressing PTSD in neurodivergent and developmentally disabled individuals requires tailored interventions:

• Trauma-Focused Cognitive Behavioural Therapy (TF-CBT): Adapted TF-CBT has shown promise, emphasizing the need for modifications to accommodate cognitive and communicative differences. 

• Eye Movement Desensitization and Reprocessing (EMDR): Preliminary evidence suggests EMDR can be effective, though adaptations may be necessary to suit individual needs. 

• Positive Systems Approach (PSA): PSA offers a comprehensive framework that emphasizes understanding an individual's life experiences, cultural background, and health status, including trauma. This approach advocates for collaboration with direct-care personnel and families to create a supportive environment tailored to the individual's unique needs (drbobcarey.com).

Implementing the Positive Systems Approach

The Positive Systems Approach involves:

• Holistic Assessment: Evaluating the individual's life experiences, cultural context, and health status to inform intervention strategies.

• Collaborative Support: Engaging direct-care staff and families in the intervention process, recognizing their crucial role in the individual's support system.

• Skill Development: Empowering caregivers with behaviour management skills to effectively support the individual.

• Respect for Individuality: Acknowledging and valuing the person's unique experiences and perspectives, ensuring interventions are person-centered.

Case Study: Addressing PTSD in a Neurodivergent Individual Using the Positive Systems Approach

Background and Initial Presentation

James, a 19-year-old autistic individual with mild intellectual disability, had been receiving support services for behavioural challenges since childhood. He exhibited frequent emotional outbursts, severe anxiety, and episodes of self-injurious behaviour (headbanging and biting his arms). His caregivers and support team initially attributed these behaviours to his autism and sensory sensitivities.

However, over time, his behaviour escalated. He experienced sleep disturbances, refused to leave his home, and displayed heightened aggression, particularly after sudden loud noises or unexpected changes in routine. Traditional behavioural interventions, such as structured routines and sensory accommodations, had limited success.

Identification and Diagnosis of PTSD

Recognizing that his distress exceeded the typical patterns associated with autism, James’s support team, led by a clinical psychologist familiar with the Positive Systems Approach (PSA), conducted a comprehensive holistic assessment that included:

• Developmental and Life History Review: Through interviews with James’s parents and caregivers, it was revealed that at age 12, he had been hospitalized for a serious illness and underwent multiple invasive medical procedures. His extreme distress during doctor visits had been dismissed as "autistic resistance to change" rather than trauma-related.

• Behavioural Observations: Certain behaviours, such as extreme panic when approached by individuals in medical uniforms and distress when lying down in a clinical setting, indicated trauma triggers.

• Caregiver Reports and PTSD Screening: Standard PTSD checklists were adapted to James’s cognitive level. His parents noted that he frequently talked about "being trapped" and displayed agitation at night—indicative of intrusive trauma memories.

A diagnosis of PTSD with comorbid anxiety disorder was made, which had been previously overlooked due to diagnostic overshadowing (assuming symptoms were solely related to autism).

Implementation of the Positive Systems Approach

The Positive Systems Approach (PSA), as outlined by Dr. Bob Carey and Terry Kirkpatrick, was then used to design a person-centered treatment plan for James.

1. Establishing a Trauma-Informed Environment

• Predictability and Control: Since PTSD is exacerbated by feelings of helplessness, James’s daily routine was structured around giving him choices and control over activities, including medical visits.

• Reducing Triggers: His support team worked to create safe exposure strategies, such as introducing medical settings gradually, starting with short visits to a doctor’s office without procedures.

2. Collaborative Support System

• Training Caregivers and Staff: A major component of PSA is empowering direct-care providers and families. James’s caregivers were trained in trauma-sensitive approaches, such as responding to distress with validation rather than redirection.

• Multi-Disciplinary Team Involvement: Psychologists, occupational therapists, and speech therapists worked together to ensure a holistic support plan.

3. Therapeutic Interventions Adapted for Neurodivergence

• Modified Trauma-Focused Cognitive Behavioural Therapy (TF-CBT): Traditional TF-CBT techniques were adapted using visual aids, social stories, and structured scripts to help James process his trauma.

• Somatic and Sensory-Based Regulation: Given his sensory processing differences, James learned body-based calming techniques, such as deep pressure therapy (weighted blankets) and rhythmic movements (rocking in a chair), to regulate his emotions.

4. Empowering James with Coping Skills

• Developing Safe Communication Strategies: Since verbal expression was challenging for James, he was introduced to color-coded emotion charts and a digital communication device to express distress.

• Building Positive Associations: Instead of avoiding medical settings altogether, he was encouraged to interact with doctors in low-stress, positive environments, such as having a casual conversation with a nurse before an actual appointment.

Outcome and Progress

After six months of implementing the PSA-based approach, significant improvements were observed:

• Reduced Emotional Outbursts: James’s episodes of aggression decreased by 70%, as reported by his caregivers.

• Improved Tolerance for Medical Settings: He was able to attend a full doctor’s appointment without panic for the first time in years.

• Enhanced Sleep Patterns: His night terrors diminished, and he began sleeping through the night more consistently.

• Increased Communication of Needs: With the use of visual tools and structured support, he was able to express anxiety before it escalated into a behavioural crisis.

Conclusion

James’s case highlights how PTSD in neurodivergent individuals is often misdiagnosed due to overlapping symptoms with autism. By utilizing the Positive Systems Approach, his support team was able to accurately identify trauma-related behaviours, create a structured intervention plan, and empower both James and his caregivers with tools for long-term success.

This case study reinforces that understanding the individual’s lived experience, rather than relying solely on traditional diagnostic frameworks, is key to effectively treating PTSD in neurodivergent populations.

With appropriate identification and tailored interventions, individuals with developmental disabilities and neurodivergent traits can experience significant improvements in PTSD symptoms. Implementing a Positive Systems Approach fosters a comprehensive understanding of the individual's needs, promoting effective treatment and enhancing overall well-being.

For a more in-depth exploration of PSA and its application, consider reading "Managing Disruptive Behaviour with a Positive Systems Approach" by Dr. Bob Carey and Terry Kirkpatrick.