Original Authors (2020): Roberto Blanco, MD; Karyn Harvey, PhD; Jill Hinton, PhD; Andrea Caoili, LCSW, EdD; Lauren Charlot, PhD
Revision (2025): Jarrett Barnhill, MD, DFAPA, FAACAP; Karyn Harvey, PhD, Jill Hinton, PhD;Lauren Charlot, PhD; Andrea Caoili, LCSW, EdD
“We need to presume the clients we serve have a history of traumatic stress and exercise ‘universal precautions’ by creating systems of care that are trauma informed.”1
Overview
Trauma is a common reality in the lives of people with intellectual and developmental disabilities (IDD) and autism spectrum disorders (ASD). There are several typologies of trauma that people with IDD might experience, and the list below represents the most commonly reported of those experiences (people may have one or more of these during their lifetime).
Most Commonly Reported Traumatic Experiences2
- Physical, emotional and sexual abuse, or exploitation
- Neglect homelessness)or abandonment (food insufficiency, unmet basic needs, or
- Death of a parent
- Divorce
- Family life that includes substance use, parental incarceration, or domestic violence
- Loss of placement/frequent moves
- Rape
- Serious chronic or acute illness/disease
- Exposure to war, combat, or civil unrest
- Catastrophic loss due to natural disasters
- Witnessing horrific events involving violence or death/serious injury (ex: car accident)
- Bullying or social exclusion
- Medical procedures
Presentation of Trauma Related Disorders in Persons with IDD
Several variables influence the clinical presentation of trauma and stressor related disorders: gender, age of the person at the time of the traumatic experience, type of triggering event, frequency and persistence of trauma, and/or the source of trauma (family member, stranger, natural phenomena). Each vulnerability factor represents psychosocial sources that interact with neurobiological vulnerabilities such as genetic risk factors, temperament, intensity of physiological response, and co-occurring neurodevelopmental and/or psychiatric disorders. For people with IDD, additional considerations include factors that contribute to resilience including the degree of cognitive impairment, problem solving abilities, communication skills, and adaptive skills, along with social supports.
Social trauma frequently goes unnoticed and under-reported by informants involved in the lives of people with IDD. Left unaddressed, chronic stressors such as bullying, isolation, and exclusion can serve as risk factors and/or create more vulnerability. Repeated exposure to stressors can be traumatic and result in the development of trauma symptoms. Core symptoms of ASD and other IDDs may predispose people to stressful experiences, as many present with overarousal. Other common features of note in this regard include tendencies to miss social cues, executive function challenges, and significant sensory sensitivities. Neurodevelopmental cognitive and social-emotional features can significantly increase a person’s susceptibility to stress, often triggering intense and sometimes overwhelming reactions. This heightened reactivity may contribute to misdiagnoses and, consequently, the prescription of less effective or inappropriate treatments.3-5
The prevalence of trauma and stress-related disorders therefore may be largely underestimated and should be considered in diagnosis and treatment planning. The DSM-51 and DM-ID-22 provide a diagnostic framework for trauma and stressor-related disorders.
Trauma and Stressor Related Disorders (DSM-5 TR)6
- Posttraumatic stress disorder for children 6 and under
- Acute stress disorders
- Adjustment disorders
- Reactive attachment disorder
- Disinhibited social engagement disorder
- Posttraumatic stress disorder
Posttraumatic Stress Disorder
Posttraumatic stress disorder (PTSD) is the most well-known and commonly diagnosed trauma and stressor related disorder. Diagnosis of PTSD requires exposure to actual or threatened death or serious harm (direct, witnessing, or learning of violent event for close family member/friend). It has been suggested that people with neurodevelopmental disorders such as ASD may require a broader definition of trauma for diagnosing PTSD. This would be one that is based on the person’s perception of the traumatic event.4 Symptoms associated with PTSD are included in the table on the next page.
Table 1: PTSD Symptom Presentation in Persons with IDD7-9
| PTSD Symptom Category | Examples | Presentation in Persons with IDD |
| Intrusive Symptoms |
| Re-experiencing the event may manifest in symptoms that are more overtly behavioral (concrete) and may include self-injury and trauma-specific re-enactments. Re-enactments can look bizarre, and it is important to distinguish such symptoms from psychotic disorder symptoms. |
| Avoidance |
| Can sometimes be seen or described as noncompliance or escape based challenging behavior. Of note: punishment tactics in behavior plans are ineffective with PTSD symptoms and may worsen them. |
| Alterations in Cognition and Mood |
| Negative emotional states may present in externalizing behaviors. People may lack understanding of competing perspectives or theory of mind, and struggle to explain internal feeling states. |
| Alterations in Arousal and Reactivity |
| Aggressive behavior is often described as “coming out of nowhere”. Being easily over aroused and anxious can provoke “fight or flight” responses to what may seem small provocations, often one’s caregivers miss. |
Each of these neurodevelopmental and emotional/behavioral responses relate to the acuity and severity of traumatizing events, level of activation of the stress response (fight, flight, or freeze), and duration of symptoms. The differences between them should remind us of the heterogeneity of trauma responses because of the unique perspectives of each person. For people diagnosed with PTSD, several factors relate to chronicity and the evolution of new behavioral and psychiatric comorbidities. A clue to the presence of transformed PTSD is the presence of treatment of refractory mood, psychotic, behavioral, and substance use disorders in the context of comorbid PTSD or history of past trauma. These people may experience multiple medication trials and failures but make significant gains with trauma-informed therapeutic interventions. Medications not usually found to be effective in treating PTSD may worsen the clinical picture. Consideration of each person’s strengths for learning replacement stress responses that are safe and effective is required. Educating caregivers regarding the need to build a sense of safety and trust and work on anxiety reduction is key to effective care.
To accurately assess PTSD for people with IDD/ASD, differing presentations to common symptoms should be considered, as described in Table 1. There are also some additional adaptations to consider that are provided below.
Adaptations for Diagnostic Criteria for PTSD7
- Investigate history for possible traumatic exposure. Caregivers may or may not be aware of exposure to trauma.
- It is essential to ask the person how they felt about the events.
- Bear in mind that adults with IDD may express trauma in overt, behavioral ways rather than via verbal expression.
- When caregivers report “non-compliance” as a problem, consider the presence of avoidance.
- Hyperarousal may present as irritability and/or aggression and can be misdiagnosed as mania.
- Fight or flight trauma driven behavioral responses to stress and adverse conditions may be viewed as representing learned negative behavior or evidence of psychosis.
- The most common psychiatric comorbidities are found among people with a history of adverse life experiences and trauma are anxiety and depression.10
Trauma Informed Care and Psychotherapeutic Interventions
It can be difficult to accurately diagnose PTSD in people with IDD, and there are limited studies regarding appropriate treatment. Characteristics of therapies for treating PTSD include increased caregiver support, psychoeducation, and training along with a need for multiple therapists and trainers to address individual needs. Most available evidence points to treatment using trauma focused-cognitive behavioral therapy (TF-CBT) and eye movement desensitization and reprocessing (EMDR).11-13
One therapeutic approach postulated as effective for all people with IDD is a trauma informed care approach.14-16 This is a recommended way to address trauma without addressing it directly. In some cases, approaching trauma directly could lead to worsening symptomatology due to inability for abstract processing of traumatic events, leading to unnecessary and inadvertent re-traumatization. Other times when trauma therapy focused on processing events is contraindicated are when acute psychiatric instability, severe suicidality, or self-injury are present.
Trauma Informed Care
Trauma Informed Care empowers patients with a sense of control over their lives, promotes healing, and wellness.16
Core Concepts
- Awareness of the prevalence of trauma in the IDD community
- Prioritize physical and emotional safety
- Build the person’s trust in caregivers
- Choice and empowerment, utilizing strengths
- Preventing re-traumatization
- Transdisciplinary
Key Components
- Emphasis on the environment, educating caregivers on trauma effects and how to support patients in a positive way
- Educate caregivers on removing triggers and learning appropriate interventions to deal with challenges
- Structured activities revolving around strengths, preferences, and choices
- Removal of potential environmental triggers in the patient’s immediate environment
- Empathetically addressing challenges as they arise
Psychopharmacological Interventions
Medications may serve as useful adjuncts to psychotherapeutic treatment modalities. One drawback to pharmacological management of PTSD is the complex pathophysiology of its core symptoms. For example, trauma can alter sleep (nightmares, night terrors), and affect emotional regulation, fear conditioning, and generalization (sensitization and neuroplasticity) among other things. Trauma affects brain neurocircuitry and functional neuroanatomy by essentially kidnapping the entrainment of stress response networks. Dysregulation can occur when there is an upset to the balance between sympathetic and parasympathetic nervous systems and the hypothalamic-pituitary-adrenal (HPA) axis. Changes in selectivity and reactivity of the HPA axis contribute to the dysregulation of cortisol responses to stress. These alterations interfere with a person’s ability to respond to stressful situations in adaptive ways, regulate, and discriminate safe conditions from those that activate “fight or flight” responses.
Antidepressants have been the most studied medications in the pharmacologic treatment of PTSD, and more specifically, selective serotonin reuptake inhibitors (SSRIs) are the treatment of choice. There are other psychopharmacological interventions recommended based on the display of symptoms as described in the table below.
Table 2: Psychopharmacological Treatment Approaches for PTSD in Patients with IDD18,7
| PTSD Symptoms | Drug Class | Most Commonly Used and Recommended Medications |
|---|---|---|
| Selective serotonin reuptake inhibitors (SSRIs) |
|
| Serotonin-norepinephrine reuptake inhibitors (SNRIs) |
| |
|
|
|
Considerations When Selecting Psychiatric Medications
Careful attention must be paid to family history of response to medication and comorbid conditions. For people with bipolar disorder, antidepressants can cause a switch from depression to mania and worsen outcomes. In this case, antidepressant medications may be contraindicated, and a mood stabilizer may be indicated instead. Also, a robust response from a close family member may indicate a potential response for the person. Other considerations in patients with IDD include higher levels of general medical conditions and side effects from medications. Because of this, any medication administration must be paired with a thorough medical evaluation and frequent monitoring for potential adverse medication effects.
Vignette
John, a 20-year-old student at a local high school, is diagnosed with moderate ID, ASD, and generalized anxiety disorder. When he arrived at school one day, John was told that Linda, the teacher’s assistant he works with in class, was not coming back to school for a month because she was having surgery. Linda had been the teacher’s assistant in John’s high school class for two years and was someone he could go to when feeling anxious. Upon hearing about this, John spiraled into a state of panic. No matter how many times he was told she would go to the hospital, come home and rest, and then return to school, he could not regain calm. He ended up turning over desks and running out of the school. He was so upset that his family was contacted to pick him up. This was portrayed as something John did because he was angry at Linda or to get out of his work.
What school personnel didn’t know is that John is fearful of losing people he cares about. When he was 4 years old, his mother unexpectedly became ill and died. The illness was sudden, and records regarding what occurred are not available. However, what is known is that she went to the hospital one morning and did not return. John was very worried about Linda and her health but was unable to articulate how he was feeling and then panicked at the thought that Linda would never return. This traumatic response was seen as anger when really John was scared. When Linda returned after recovering from her surgery, the IEP planning team decided that she should not return to the same classroom because John was too “attached,” and might have more “behavioral issues.” Therefore, John became further isolated. His need for emotional support was misinterpreted and his trauma unaddressed.
Discussion: If a historical and comprehensive review of John’s history was known to the school, they would have learned about his past experiences and loss. In addition to the abrupt loss of his mother, his 3 older siblings have left home, and he and his father live in the house alone. This historical information would trigger a referral to psychotherapy and the provision of trauma informed care interventions within the school.
According to Rumball18, an outline for treatment interventions and modifications for John would look like the following:
- Trauma informed care interventions applied in the classroom and considered as part of the IEP planning process. Recognition that John had a fear response instead of being labeled as “non-compliant” would result in a plan for Linda’s return that was not contingent on “behavior”
- EMDR therapy using adapted storytelling methods taking John’s moderate intellectual disability into consideration
- Adapted trauma focused cognitive behavioral therapy to reduce intense response to stressors
- Psychopharmacological interventions: Zoloft 100 mg, Guanfacine 1.5 mg for anxiety and irritability
References
- Hodas GR. Responding to Childhood Trauma: The Promise and Practice of Trauma-Informed Care. Washington, DC: National Association of State Mental Health Program Directors; 2006. Accessed June, 2025. http://www.nasmhpd.org/docs/publications/docs/2006/Responding%20to%20Childhood%20Trauma%20Hodas.pd
- Mevissen L, Didden R, de Jongh A, Korzilius H. Assessing posttraumatic stress disorder in adults with mild intellectual disabilities or borderline intellectual functioning. J Ment Health Res Intellect Disabil. 2020;13(2):110-126. doi:10.1080/19315864.2020.1753267
- Rumball F, Happé F, Grey N. Experience of trauma and PTSD symptoms in autistic adults: risk of PTSD development following DSM-5 and non-DSM-5 traumatic life events. Autism Res. 2020;13(12):2122-2132.
- Kerns CM, Newschaffer CJ, Berkowitz SJ. Traumatic childhood events and autism spectrum disorder. J Autism Dev Disord. 2015;45(11):3475-3486. doi:10.1007/s10803-015-2392-y
- Lau BY, Leong R, Uljarevic M, Lerh JW, Rodgers J, Hollocks MJ, et al. Anxiety in young people with autism spectrum disorder: common and autism-related anxiety experiences and their associations with individual characteristics. Autism. 2020;24(5):1111-1126.
- American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 5th ed. Washington, DC: American Psychiatric Association; 2013.
- Fletcher RJ, Barnhill J, Cooper S-A, Eds. Diagnostic Manual — Intellectual Disability: A Textbook of Diagnosis of Mental Disorders in Persons With Intellectual Disability. Kingston, NY: NADD Press; 2017.
- Mevissen L, De Jongh A. PTSD, and its treatment in people with intellectual disabilities: a review of the literature. Clin Psychol Rev. 2010;30(3):308-316.
- Mannion A, Brahm M, Leader G. Comorbid psychopathology in autism spectrum disorder. Rev J Autism Dev Disord. 2014; 1:124-134.
- Gilderthorp R. Is EMDR an effective treatment for people diagnosed with both intellectual disability and post-traumatic stress disorder? J Intellect Disabil. 2015;19(1):58-68.
- Shapiro F. Eye Movement Desensitization and Reprocessing. New York, NY: Guilford Press; 2018.
- Mevissen L, Lievegoed R, Seubert A, De Jongh A. Treatment of PTSD in people with severe intellectual disabilities: a series of case series. J Dev Neurorehabil. 2012;15(3):223-232.
- Keesler J. A call for the integration of trauma-informed care among intellectual and developmental disability organizations. J Pol Pract Intellect Disabil. 2014;11(1):34-42.
- Mansell S, Sobsey D, Moskal R. Clinical findings among sexually abused children with and without developmental disabilities. Am J Ment Defic. 1998;36(1):12-22.
- Hales T, Kusmaul N, Nochajski T. Exploring the dimensionality of trauma-informed care: implications for theory and practice. Hum Serv Organ Manag Leaders Gov. 2017;41(3):317-325.
- Substance Abuse and Mental Health Services Administration. SAMHSA’s Concept of Trauma and Guidance for a Trauma-Informed Approach. Rockville, MD: Substance Abuse and Mental Health Services Administration; 2014.
- Rumball F. A systematic review of the assessment and treatment of post-traumatic stress disorder in individuals with autism spectrum. Rev J Autism Dev Disord. 2019; 6:294-324.