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Understanding the Trauma Experiences of Autistic Individuals

By Professor Tony Attwood and Dr. Michelle Garnett.

 

Trauma can take many forms. The DSM-5-TR diagnostic criteria for PTSD (post-traumatic stress disorder) requires the experience of overt catastrophic events such as war, assault, natural disaster, near-death experiences and serious accidents. However, trauma is not always so extreme and is not essentially related to one catastrophic event. Trauma happens when the person is overwhelmed by aversive experiences, especially when there is repeated exposure to those events. The key factor is the person’s perception and reaction to a single or repeated event.

The high levels of stress and anxiety experienced by Autistic individuals can make them particularly sensitive and reactive to traumatic events, causing hypervigilance, low resilience and amplification of the depth of emotional response. The signature characteristics of Autism may also contribute to determining which events are likely to be perceived as traumatic, such as social rejection, invalidation, stigma, and sensory sensitivity.

 

Signs of trauma

The signs of trauma include intrusive thoughts and images (flashbacks) associated with a trigger or reminder of a traumatic event or events, subsequent anxiety, anger and distress. Trauma can affect sleep in terms of insomnia and nightmares, and psychological effects include low self-esteem and depression, problems maintaining concentration, issues associated with trust and emotional detachment and dissociation.

The signs of trauma can be inconsistent, with some periods where the person seems fine and others where they exhibit distress. In complex trauma, in addition to the core observable symptoms of PTSD, as described above, there are also problems of a negative self-concept, emotion dysregulation, and difficulties sustaining interpersonal relationships.

 

The Interactive Trauma Scale – A Web-based Measure for Autistic Children

The Interactive Trauma Scale (Hoover & Romero, 2019) is available as a touch-screen App designed for Autistic children aged 8-14. There are eight trauma exposure items:

  1. Bullying and teasing
  2. Physical neglect
  3. Witnessed ‘bad or scary things’
  4. Touched by someone on ‘your private parts’
  5. Being in a natural disaster
  6. Lost someone
  7. Hurt by an adult
  8. Called mean names

The symptom items include:

  • Intrusion symptoms, e.g. ‘bad dreams’
  • Negative mood ‘I am no good’
  • Dissociative symptoms ‘I feel like things aren’t real’
  • Avoidance ‘I try to stay away from people, or things that remind me’
  • Arousal ‘I do things that are not safe’

This instrument will be of value to clinicians and academics researching Autism and trauma, but also for families who are concerned that their Autistic child may be experiencing trauma.

 

Prevalence of Autism and Trauma

A study conducted by Rumball et al. (2020) indicated that up to 35% of Autistic individuals surveyed experienced events that they perceived as traumatic despite not fitting the description of trauma as indicated in the DSM. The most reported non-DSM trauma was bullying. A study by Haruvi-Lamdan et al. (2020) of Autistic adults found that 32% of the Autistic participants in the study had signs of PTSD compared to 4% of the non-autistic participants. The study also confirmed our clinical experience that experiencing trauma increases Autistic characteristics such as social withdrawal, cognitive rigidity, emotion regulation difficulties, rumination and sensory sensitivity. A more recent study found that 68.9% of Autistic children have confirmed or suspected trauma or abuse (Dahiyal et al., 2024).

 

Sources of Trauma for Autistic Individuals

Bullying, Physical and Emotional Abuse

We now have research on the potential sources of trauma for Autistic children and adults (Kerns et al., 2022). The study found that Autistic children and adults experience traditionally recognised traumas, such as physical, sexual and emotional abuse, neglect, severe injury and illness, and bullying, but these are experienced at above-average rates compared to non-autistic children. The range of the number of traumas reported was from 3 to 17. The most frequently endorsed forms of trauma were bullying, physical abuse, emotional abuse and “other traumas.”

“Other Traumas”

Each one of the participants in the study described sources of trauma in the interviews that were not measured by the standardised measure of trauma, i.e. “other trauma”. The researchers then sought to understand the sources of “other trauma” that had been experienced. Three themes emerged, namely feeling trapped, which had three sub-themes, including physical restraint, including the use of sedation, loss of autonomy and over scrutiny, and loss of opportunity, for example, being withdrawn from learning opportunities and social exclusion, included pervasive bullying, being treated “like an alien” but not understanding why, experiencing stigma and discrimination, and experiencing betrayal.

A previous study by Kerns et al. (2015) identified a source of trauma often experienced when the Autistic person was a child was feeling marginalised and excluded. Most participants described repeated incidents of these traumas. There were varied and accumulating forms of exclusion, and the authors suggest that it is these traumas that may be the understudied contributors to mental health outcomes in autism.

Sensory Sensitivity and Trauma

Heightened sensory sensitivity is one of the core characteristics of Autism. Sensory experiences that are not perceived as aversive in non-autistic individuals can be perceived as excruciatingly painful for Autistic people. This includes sudden ‘sharp’ noises, such as a dog barking or someone sneezing, specific sounds, such as a hand dryer or vacuum cleaner, bright sunlight, specific aromas and being touched. These experiences may frequently occur during the day, but parents, teachers and line managers may invalidate the experience by saying, ‘Ignore it. You will get used to it’. Unfortunately, repeated exposure does not reduce the depth of distress, and the necessary environmental modifications may not be made. The sensory pain can be a source of trauma for Autistic individuals.

 

Autistic Vulnerability to Trauma Events and PTSD

Kerns et al. (2015) confirmed that Autism and trauma may mutually exacerbate one another. A recent review of the relevant research literature by Bernier et al. (2024) exploring the intersection between Autism and trauma elucidated the intricate interactions between Autism and trauma and suggested a complex yet nuanced relation between traumatic events, trauma-related symptoms, and Autism-related behaviours. Overall, the associations between Autism and trauma were supported, showing that both risk factors for Autism and Autism-related behaviours enhance the vulnerability to trauma.

 

A study by Lim and Young (2024) identified four main ways that Autism and trauma interact:

  1. Autism increases one’s vulnerability to experiencing a traumatic event,
  2. Autism amplifies the impact of the trauma,
  3. Autistic behaviours can serve as healthy or unhealthy coping mechanisms following a traumatic event,
  4. Autism compounds barriers to receiving support.

Thus, we are now able to confirm that trauma can increase Autistic characteristics.

 

Treatment of Trauma for Autistic Individuals

There are primarily two treatments for Autistic children who have experienced trauma. The first is trauma-focused cognitive behaviour therapy (CBT), which includes emotion regulation, exposure therapy, cognitive restructuring, a safety plan and programme generalisation and maintenance (Andrzejewskil et al., 2024; Stack & Lucyshyn, 2019). The second is eye movement desensitisation reprocessing (EMDR), which has been a successful therapy for trauma in Autistic adults (Lobregt-van Buuren et al. 2019) and has been used with Autistic children (Clarke & Darker Smith, 2024; Van Diest & Marguerite, 2022) with adaptation to accommodate the characteristics of Autism.

 

Where to from Here?

To further understand the association of autism with trauma, we have developed two brand new events: Trauma and Autistic Children and Teens and Trauma and Autistic Adults. Within these events, you will learn:

  • Why the effects of trauma can be missed in autistic people, and autism can be missed in traumatised people
  • About the types of events that can cause trauma for autistic people
  • The recent research on the association of trauma and autism.
  • The similarities and differences between autism and trauma
  • The impacts of trauma on an autistic person.
  • Strategies that can help the person, their partner and/or family
  • When should you seek professional help, and what types of assistance are available to help resolve and heal from trauma/s?

Whilst the themes and content description for these events are similar, please note that we have divided the content by age because the research, case examples, impacts, types of support and strategies for each age group differ. As a result, the events are quite different from each other.

 

Recommended Reading

Folger and Phelps Eds. Trauma, Autism and Neurodevelopmental Disorders Springer 2018

Morgan and Donahue Living with PTSD on the Autism Spectrum Jessica Kingsley Publishers 2021

Gates Trauma, Stigma and Autism Jessica Kingsley Publishers 2019

 

References

 

Andrzejewskil et al 2024) Examining Therapeutic Alliance Among Autistic Youth and Their Caregivers throughout Trauma-Focused Cognitive Behavioral Therapy. Paper presented at INSAR, Melbourne, May 2024

Berkowitz, (2022). Autism, 26(8), 1987-1998

Bernier et al. (2024). The Intersection Between Autism and Trauma. Paper presented at INSAR, Melbourne, May 2024

Cappadocia et al. (2012) Journal of Autism and Developmental Disorders 42

Clarke & Darker Smith (2024) Neurodiversity-affirming EMDR therapy with Autism and ADHD. Chapter in: The Oxford Handbook of EMDR, Oxford Library of Psychology

Dahiyal et al. (2024). Supporting Interdisciplinary Care for High-Needs Individuals at the Intersection of Intellectual/Developmental Disabilities and Mental Health. Paper presented at INSAR, Melbourne, May 2024

Haruvi-Lamdan, Horesh and Golan (2018). Psychological Trauma: Theory, Research, Practice and Policy 10, 290-299

Hoover & Romero (2019). Journal of Autism and Developmental Disorders 49 1686-1692

Kerns et al. (2015). Journal of Autism and Developmental Disorders 45

Kerns et al. (2022) Autism 26.

Law et al. (2013) Journal of Developmental and Behavioral Pediatrics

Lim and Young (2024) Investigating the Relationship between Autism and Post-Traumatic Stress Disorder in Young Adults. Paper presented at INSAR, Melbourne, May 2024.

 

Lobregt-van Buuren et al (2019) Journal of Autism and Developmental Disorders 49,

Schroeder et al. (2014). Journal of Autism and Developmental Disorders 44

 

Stack & Lucyshyn (2019). Journal of Autism and Developmental Disorders 49

Van Diest & Marguerite (2022). Journal of EMDR Practice and Research 16.

 

Van Roekel et al. (2010). Journal of Autism and Developmental Disorders 40

 

Wright et al. (2018). Journal of Child and Adolescent Trauma 11