Complex trauma happens when someone feels they are trapped and alone in continuing threatening or unsafe circumstances, like child abuse, war, or racism (World Health Organization, 2019). In situations where a person experiences threats every day, changes occur to the part of the nervous system that recognizes danger. Instead of only switching on when there is an actual threat, it is switched on all the time, even if the person is safe (Bremner, 2006; Porges, 2009). This is called traumatic stress, and it can lead to many physical and mental health problems, including complex post-traumatic stress disorder, or C-PTSD (Herman, 1992a, 1992b; van der Kolk et al., 1996; Streeck-Fisher & van der Kolk, 2000; van der Kolk, 2014; SAMHSA, 2014).
For autistic people who are nonspeaking or have intermittent, unreliable, or insufficient speech, being denied access to augmentative and alternative communication (AAC) tools and supports that work for them results in a kind of complex trauma in and of itself. Without effective communication, a person cannot express themselves, make decisions about their own life, connect with others, or be a part of their community. In addition, a person with an expressive communication disability is likely more susceptible to experiencing additional forms of trauma, such as abuse and violence (Bryen et al., 2009; Shapiro, 2018; Baladerian et al., 2013). They may experience more interventions that effectively punish them for being disabled (Lovett, 1996; Sandoval-Norton & Shkedy, 2019; Shkedy et al., 2019; Harvey, 2012); more isolation, seclusion, and restraint (National Disability Rights Network, 2009); and greater serious and preventable health events (Stransky et al., 2018; Morris, 2022). This trauma is compounded by the fact that these events may not be recognized, reported, or addressed by others (Blanco et al., 2020). People who have been denied access to AAC need to be understood and should be assumed to have experienced multiple kinds of trauma multiple times for some, most, or all of their lives.
Understanding that a person has experienced trauma is crucial to beginning the healing process. However, in the case of people who need AAC to be heard and understood, this recognition may be even more important and urgent given the current lack of societal understanding of this dynamic. Each day, millions of disabled people, autistic and non-autistic alike, are subjected to coercive, dehumanizing treatment in an attempt to change their “challenging behaviors” (see, e.g., Lovett, 1996; Harvey, 2012).1 Yet these “behaviors” may not be inherent to their disability or possible to change with behavior plans. They may be manifestations of trauma.2
There are five dimensions of complex post-traumatic stress disorder: re-experiencing, avoidance, hypervigilance and difficulty with emotions, persistent negative feelings about the self, and persistent problems with relationships (World Health Organization, 2019). These dimensions remain the same regardless of disability, but the trauma that nonspeaking and sometimes-speaking people endure is unique to them and their circumstances, and so are the ways that they might express that trauma (Lovett, 1996; Harvey, 2012; Macknight, 2014; Pitonyak, 2016; Blanco et al., 2022).
Re-Experiencing Trauma
A traumatized brain returns to the same experiences over and over again, attempting but unable to process them and move on. This results in potentially debilitating symptoms, including flashbacks, where a person’s body and brain react as though a past threat is happening in the present; intrusive memories or emotions; intense nightmares; and re-enactments, conscious or unconscious ways of acting out the trauma again (Macknight, 2014; SAMHSA, 2014).
Unfortunately, these manifestations are often deeply internalized and can be difficult even for nondisabled people to understand or explain. Triggers—people, places, sensations, situations, memories, or feelings that remind a person of their trauma, causing distress and symptoms—may be obvious, or they might not, especially if the individual does not yet have access to AAC that works for them.
In the lives of nonspeaking and sometimes-speaking autistic people, the results of re-experiencing trauma may look like strong emotional reactions such as fear, panic, anger, or aggression; crying or curling up suddenly; rocking back and forth in distress; freezing up; self-injury, including self-injurious stimming like head-banging or biting; and re-enacting traumatic things that happened to them, which may look like risky behaviors, or like “bizarre” play or unusual behavior, sometimes mistaken for psychosis or agitation (chavisory, 2014; Pitonyak, 2016; Blanco et al., 2020). They may also become less able to communicate around specific people or in specific situations that remind them of previous traumatic experiences.
Avoidance
A survivor of trauma avoids triggers in order to avoid the distress and suffering that comes with them. In the lives of nonspeaking or sometimes-speaking people, this may be seen as “noncompliance,” elopement, or hiding (Blanco et al., 2020). Self-injurious or aggressive behavior may also be a strategy to keep triggers away from the person.
Hypervigilance and Difficulty With Emotions
A traumatized brain is always on the lookout for threats, no matter how safe the situation really is. This state of looking out takes a toll on the body, causing or worsening physical chronic health concerns like headaches, gastrointestinal problems, and chronic pain (Herman, 1992b; Streeck-Fisher & van der Kolk, 2000; SAMHSA, 2014). Hypervigilance, and the related issue of difficulty understanding and regulating one’s own emotions, may appear as being jumpy, fearful, or easily set off; having a bad temper; lashing out or breaking down at seemingly minor problems; emotional numbness; and being unable to calm down after stressors, resulting in prolonged and frequent meltdowns and shutdowns (Herman, 1992b; Harvey, 2012; Macknight, 2014; Delahooke, 2019; Blanco et al., 2020).
Persistent Beliefs About Oneself as Worthless, Helpless, or Powerless
These beliefs may include feelings of guilt, shame, and failure, as well as difficulties with maintaining a sense of self (Herman, 1992a, 1992b). The person may have persistent fears of being hurt, rejected, or abandoned, and perceived failures or rejections may be experienced intensely.
Persistent Difficulties With Relationships and Attachment
These difficulties may lead to abusive or unstable relationships, increased fear or anxiety in social situations, learned helplessness (accepting abuse; being unable to say “no”), lifelong social isolation, and difficulty trusting other people (Herman, 1992a, 1992b).
Struggling with such symptoms also leads to high rates of depression, anxiety, and suicidality in trauma survivors, which may contribute to problems like self-injury, feeding problems, social anxiety, agoraphobia, and more in nonspeaking and sometimes-speaking autistic people (Herman, 1992b; Pitonyak, 2016; Chong et al., 2024). Another common feature is dissociation, an experience of being separated from the world around you that can cause difficulty with sensory integration, self-awareness, and awareness of one’s environment. It may be difficult for a person who is dissociating to connect to the world around them or notice things happening in their body (Macknight, 2014; Herman, 1992b).
Treating involuntary trauma responses as intentional, inconvenient, and unwanted does not extinguish those responses (Delahooke, 2016). Instead, it reinforces beliefs that the person cannot trust the people who claim to want to help them, that the person themself is bad or a problem, and that they are powerless to change the way people treat them. The trauma responses remain and may even intensify but become more and more internalized; the person becomes “compliant,” but at a terrible cost (Macknight, 2014).
No research to date has recognized the trauma that may come from being deprived of communication, despite the fact that the same things that characterize complex trauma—helplessness, loss of autonomy, loneliness, isolation, and recurrent perceived or real danger (Herman, 1992a; van der Kolk, 2014)—underlie the experience of being unable to rely on speech to be heard and understood in the absence of effective communication supports. The state of the science on trauma, communication disability, and “challenging behavior” must recognize the lived realities of autistic people who cannot rely on speech alone to be heard and understood. Without recognizing the trauma that almost certainly results from being denied access to communication, millions will continue to suffer in silence.
Family members, educators, paraprofessionals, direct support professionals, clinicians, and other allies must and will be an integral part of changing this dynamic. Strategies can include learning more about trauma and trauma-informed approaches to “challenging behavior” (Lovett, 1996; Harvey, 2014; Pitonyak, 2016),3 presuming that every person has the basic human competence to understand and learn (LoStracco, 2017), fostering self-determination skills like saying no and how to set and respect boundaries (NJC, 2024), creating opportunities for meaningful choice, building genuine and trust-based relationships (Macknight, 2014; Pitonyak, 2016), and supporting people with speech-related disabilities to learn and use robust, language-based AAC as soon as possible.
Responding to trauma through anything other than trauma-responsive approaches and evidence-based trauma therapies4 invariably harms, rather than helps, trauma survivors. For autistic survivors who cannot rely on speech, it also contributes to the lifelong violations of civil and human rights, such as access to education, access to effective healthcare, and the ability to live and participate meaningfully in the community. Paving the path to healing trauma from communication deprivation is long overdue.
In this article, the author follows the terminology guidelines adopted by CommunicationFIRST, an organization led by and for people who need and use AAC. See “The Words We Use” (2023) at https://communicationfirst.org/the-words-we-use/.
Ren Koloni, MA, is Program Associate at CommunicationFIRST. CommunicationFIRST is the only nonprofit organization dedicated to protecting and advancing the civil rights of the more than 5 million children and adults in the United States who, due to disability or other conditions, cannot rely on speech alone to be heard and understood. For a more in-depth version of this and other resources we have created, or to learn more about the organization, visit communicationfirst.org. The author can be reached at rkoloni@communicationfirst.org. All other communication can be addressed to info@communicationfirst.org.
Footnotes
- Throughout this piece, the phrase “challenging behaviors” is written with quotation marks because, while it is a quick shortcut to describing a variety of problems that may be familiar to autistic people and those who work with us, it is ultimately an unnecessary, stigmatizing, and pathologizing judgment on a person who is struggling. It erases and dehumanizes the person behind the behaviors, denying the possibility that there may be valid and complex reasons behind their actions. Whenever possible, CommunicationFIRST chooses instead to describe the specific movements and actions that may be unexpected, inconvenient, or harmful to the individual or others (CommunicationFIRST, 2023).
- Not all unusual, unexpected, or inconvenient behavior should be assumed to be related to trauma. “Challenging behaviors” may also be related to unknown medical problems (e.g., hitting one’s ears to cope with the discomfort of a mild ear infection) (Kripke, 2016), attempts to communicate (e.g., repeatedly opening the fridge to ask for a snack) (Harvey, 2014), attempts to interact with one’s own environment and exert agency (e.g., moving furniture to make a room more comfortable) (Lovett, 1996; Harvey, 2014), or even something that the individual can’t control (e.g., compulsions, apraxia, or tics) (Harvey, 2014).
- For more on the mechanisms and manifestations of trauma, see the work of Judith Herman and Bessel van der Kolk. For trauma and trauma-informed approaches to “challenging behavior” in the field of intellectual and developmental disabilities, see the work of Herb Lovett, David Pitonyak, Karyn Harvey, Dave Hingsburger, and Mona Delahooke.
- These treatments may include dialectical behavior therapy (DBT), trauma-focused cognitive behavioral therapy (TF-CBT), or eye movement desensitization and reprocessing therapy (EMDR), all of which have been validated for people with intellectual and developmental disabilities (Macknight, 2014; Blanco et al., 2020; D’Amico & Hoover, 2021).
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