The Diagnostic Criteria for Complex PTSD (C-PTSD): A Beginner’s Guide

1. What is complex trauma?
2. Complex PTSD Criteria vs. PTSD Criteria
   1. PTSD Core Areas
   2. C-PTSD Criteria
      1. A) Severe and pervasive problems in affect [emotional] regulation.
      2. B) Persistent beliefs about oneself as diminished, defeated, or worthless, accompanied by deep feelings of shame, guilt, or failure related to the stressor.
      3. C) Persistent difficulties in sustaining relationships and in feeling close to others.
3. C-PTSD vs. BPD
4. A note on healing

While filling out therapy intake paperwork a few years ago, I stopped at a question that asked me to identify the worst event of all the DSM-5 traumas I’ve experienced.

My worst trauma? How was I supposed to choose between all of them?

I flagged reception and asked how I was supposed to fill it out.

She gave me a confused look and said, “choose the one that interferes with your life the most.”

That didn’t narrow it down. Why could I only answer questions about a singular trauma? And what about the traumas I couldn’t remember well?

It made it difficult to answer questions like “how often do you avoid memories, thoughts, or feelings about the stressful event?”

For the trauma I selected, I only avoided it a bit, but I spent a lot of time avoiding all of my traumas.

One of the questions was, “how often do you have trouble remembering important parts of the stressful experience?”

Naturally, I chose the trauma I best remember. So, if I were going off this, the answer would be “not at all”. But for some of my other traumas, I couldn’t remember most or all of the event.

The questionnaire used most often to screen for PTSD is the PCL-5, which assesses based on the DSM-5 criteria for PTSD. The problem is that the DSM-5 criteria are centered around one traumatic event while acknowledging that the symptoms can be caused by multiple traumatic events.

That means that in the U.S., single traumas and multiple compounded traumas are treated as the same, with no acknowledgment of how multiple traumas or minor compounded traumas could differ from a singular traumatic event.

There are some clear problems with not differentiating complex trauma and trauma from a singular event. The ICD-11, the most widely used diagnostic manual, has addressed these issues with the introduction of the C-PTSD diagnosis.

This diagnosis has been proposed since the 80s but was excluded from the DSM-5 as there was too much debate over whether the symptoms warranted their own diagnosis. Currently, the C-PTSD symptoms that are separated in the ICD-11 are included under PTSD criteria in the DSM. So, the symptoms are the same, but the question is whether they warrant their own label.

Personally, I think having it as a diagnosis is beneficial. It helps doctors understand the severity and pervasiveness of my symptoms, connects me with others who have experienced complex trauma instead of singular traumatic events and helps highlight specific symptoms resulting from complex trauma.

*Disclaimer* – This is an informational resource, not a diagnostic source. If you have the privilege to see a competent clinician with multi-cultural training, it is better to have a professional distinguish these conditions. We recognize that the luxury of a professional diagnosis is inaccessible to many, and they are left with the internet to parse out their symptoms. We empathize with this, which is why we give as thorough information as possible from the source while encouraging you to seek a professional when possible.

What is complex trauma?

I think a common reaction to hearing the phrase “complex trauma” is people thinking “oh, my trauma wasn’t that bad. It couldn’t be complex.”

Generally, the word complex comes with the connotation that something is worse, so complex trauma must be horrific.

A better way of thinking of complex trauma is considering it as compounded trauma.

The ICD-11 says :

Complex post traumatic stress disorder (Complex PTSD) is a disorder that may develop following exposure to an event or series of events of an extremely threatening or horrific nature, most commonly prolonged or repetitive events from which escape is difficult or impossible (e.g. torture, slavery, genocide campaigns, prolonged domestic violence, repeated childhood sexual or physical abuse).

So complex trauma can be thought of as prolonged or repetitive and inescapable.

Child abuse is one of the most common causes of C-PTSD. Considering child abuse makes you more likely to experience other forms of trauma later in life, this compounding effect can be a risk factor in developing C-PTSD.

Another aspect of complex trauma is that it is usually caused by another person. The effects of it are more widespread than PTSD, where it may affect emotional regulation and beliefs about yourself. This is a response to consistently feeling unsafe and like you can’t escape the traumatic situation.

Complex PTSD Criteria vs. PTSD Criteria

Complex PTSD inherently meets all the same criteria as PTSD but further expands some criteria.

PTSD Core Areas

To meet the diagnosis, you must meet the three core areas of PTSD –
re-experiencing the traumatic event, avoidance of reminders or triggers of the traumatic event, and hypervigilance.

Re-experiencing can look like flashbacks of any kind, nightmares, or intrusive thoughts about the trauma.

Avoidance of reminders typically looks like anything to avoid triggering flashbacks or other unpleasant reminders of the trauma. It can look like avoiding people or places associated with trauma or trying not to think about traumatic events.

Hypervigilance is feeling on guard against an imminent threat of some kind. Sitting with your back against the wall, checking behind you frequently, or getting startled easily might be behaviors of hyper vigilance (the ICD-11 notes that individuals with C-PTSD might be startled less easily than traditional PTSD). Other behaviors can be things you picked up from your trauma that you learned to keep yourself safe (e.g., hiding food you’re throwing away because something bad used to happen if you didn’t, etc.).

Sometimes the primary symptoms of PTSD can look more subtle with C-PTSD because you learn to diminish them or were forced to express them covertly. For example, some ways my re-experiencing shows up is often emotional flashbacks where I may not be aware that I’m having a flashback. My avoidance tends to look like avoiding conflict or saying yes when I don’t mean it to try to appease since conflict is a trauma trigger for me. Hypervigilance for me tends to be somatic symptoms like the inability to relax and tension in my shoulders from my body overreacting to minor stressors.

C-PTSD Criteria

Along with the core areas of PTSD, C-PTSD highlights three additional criteria. The criteria are quoted from the ICD-11.

A) Severe and pervasive problems in affect [emotional] regulation.

The examples the ICD-11 lists are greater emotional reactions to minor stressors, violent outbursts, reckless or self-destructive behavior, dissociative symptoms while stressed, and emotional numbing (particularly of positive emotions). I think that coping style can also indicate this. For example, using substances, food, or other distractions to emotionally numb or regulate shows issues in emotional regulation.

B) Persistent beliefs about oneself as diminished, defeated, or worthless, accompanied by deep feelings of shame, guilt, or failure related to the stressor.

This one sounds lofty, but it’s universal for those that have experienced complex trauma. The example the ICD-11 lists is an individual feeling guilty for not escaping the trauma or being unable to save others from experiencing it.

CW: Specific beliefs surrounding trauma

Here are some other examples of beliefs that could reflect this criterion:

• I will never be in control of myself or my emotions.
• I should have done more. I’m partially to blame for not doing more to stop it.
• I’m a terrible person.
• I shouldn’t have kids because I know I’ll abuse them.
• I will always be tainted by my abusers.
• People know I’m different because of the trauma.
• I will never be healed.
• I am a broken or damaged human.
• I deserved the trauma because of something I did.
• It’s not worth trusting other people because, in the end, I know they’ll hurt me.
• I cannot trust myself.
• Others can’t hear what happened. They’ll look down on me or see me as broken.
• I’m crazy or out of control.
• Why does it matter if I do self-destructive actions?
• I’m not worth protecting.
• My abusers stole a piece of me that I can never get back.
• If people knew the real me, they’d stay away.

Many more beliefs can be associated with this criterion that isn’t listed here, and you don’t need to have every belief to meet the standard.

It may be difficult to examine your beliefs for many individuals, especially those with interoception difficulties. It may be easier to examine behaviors. For example, if you believe “I will never be in control of myself or my emotions.” you may check your behavior often, prevent yourself from connecting with others, isolate yourself when you have large emotions, or avoid seeing therapists because you don’t believe they’ll help. Think of corresponding behaviors to the beliefs above and see if you meet the criteria.

Another note I wanted to add here is that I’m not placing value judgments on the beliefs above. Many professionals refer to these as “negative beliefs,” which only serve to further the shame around them and can gaslight survivors. Feeling like others are not trustworthy may be a rational belief in response to a scary circumstance. It’s important not to dismiss this as irrational but instead recognize how the belief affects your functioning in the here and now.

C) Persistent difficulties in sustaining relationships and in feeling close to others.

The example cited in the ICD-11 is that the person avoids, insults, or has little interest in social relationships. Or, they have intense relationships that don’t last very long.

Autism complicates this a bit because it becomes an issue of “am I not wanting to engage socially because of autism, c-PTSD, or both?”

I think there are some key distinctions here. The criteria for autism mention difficulty with social communication. It does not specify avoiding or having little interest in social situations. It can be a learned behavior for autistic folks due to compounded trauma in social situations to avoid them. Whether social trauma alone is enough to meet the criteria for complex trauma is debatable and out of the scope of this article, but depending on who’s defining it may or may not fit the definition.

For this criterion, it’s essential to examine your own relationships. How many people are you connected to? How long do your social and romantic relationships tend to last? How many close friends vs. acquaintances do you have? Do others feel like you’re distant, clingy, or inconsistent?

This goes back to attachment style. You likely meet this criterion if you identify with an insecure attachment style.

C-PTSD vs. BPD

One of the most contentious parts of this diagnosis is how it’s differentiated from borderline personality disorder (BPD).

Various studies have explored markers to distinguish the two, but one from 2014 discussed four major symptoms that set it apart. Four symptoms that indicate BPD over C-PTSD were 1) Frantic efforts to avoid abandonment, 2) splitting (switching back and forth from seeing another person as all good or all bad), 3) unstable self-image, and 4) impulsiveness.

There are a few important considerations with this. First, many of these symptoms are developmentally dependent. A teenager or young adult is expected to have an unstable sense of self and impulsiveness. A fully formed adult brain is not. Considering this is important for whether someone meets diagnostic criteria.

Second, differential diagnoses must be considered. Since dissociation is present in both c-PTSD and BPD, an unstable sense of self can indicate a dissociative disorder instead of BPD. Impulsiveness is a feature of many clinical diagnoses, including bipolar and other personality disorders. Another common misdiagnosis of BPD is rigid thinking in autism (ASD) or obsessive-compulsive (OCD) being mistaken for splitting.

Third, a person can have both BPD and c-PTSD. This can be especially difficult to differentiate since there is symptom overlap between the two. Another problem with not having c-PTSD in the DSM is that it would be difficult for a clinician to correctly attribute which symptoms are associated with which diagnosis since PTSD does not break down the criteria in this way.

Not having c-PTSD in the DSM creates a conflict between accessing formal evaluation that can differentiate these diagnoses and not having adequate language in the diagnostic criteria to do so.

A note on healing

Meeting the criteria of c-PTSD does not mean you are doomed forever and that your life is fated to be unstable or unfulfilling. C-PTSD is a trauma disorder. Trauma can be healed, and your symptoms can go away with time, therapy, and self-exploration.

I used to meet the criteria for c-PTSD. Now, my symptoms would be considered in remission. If you had asked me years ago if I would ever get better, I likely would have told you that c-PTSD is incurable. That I was going to be miserable and unstable for the rest of my life with little hope of connecting with others.

Learning coping skills that work for me and having words for my experiences, connecting with unconditionally loving people, and finding a therapist I developed a deep rapport were all essential parts of my healing. Finding ways to contribute to my community through mutual aid and writing my story were powerful ways of reclaiming a past I considered broken.

“Trauma changes your brain and so does healing.” – Dr. Jen Wolkin

Acting Childish – What is Age Regression?

This post contains affiliate marketing links.

CW: This article references adult topics, including kink. Reader discretion is advised.

I received a notification from Tik Tok that my video had been taken down. It was my video on little alters.

I did a series showcasing different types of alters, and for each video, I dressed and acted like the type of alter in the video while providing helpful information.

So in the little video, I held stuffed animals, had a pacifier, and acted childishly. It got taken down for “adult nudity and sexual content.”

I was able to appeal and get the video restored, but I was not surprised at this reaction. When people see adults acting like children, they automatically think it’s related to pedophilia.

My entire life, I have been complimented for seeming mature and grown-up. Now that I’m an adult, I’m bombarded with the need to experience childhood. I needed a safe space to be cared for as a child.

Age regression is a complex topic that we don’t know a lot about. Science has almost no research on voluntary age regression, and the little that’s been explored has been on involuntary or hypnotic regression.

Social media has shed light on age regression, showing a community of people coping similarly.

What is age regression?

Age regression is the voluntary or involuntary experience of reverting to a childlike state (little space); mentally, emotionally, and somatically. It is not a sexual experience but a coping mechanism for dealing with stress, particularly if the person has experienced childhood trauma.

Age regression is exhibited in many mental conditions, including anxiety, BPD, PTSD, DID, OSDD, autism, and more.

Involuntary age regression is often the result of trauma and may be a cognitive/primary sensory flashback. This may look like going temporarily mute, suddenly having a reduced vocabulary or higher pitch, being flooded with childhood memories or emotions, craving that a loved one “makes it better”, or any other behavior that is regressive to your usual state of being. This is done without a conscious effort or control over the reaction.

Conversely, voluntary age regression is an intentional state of regression that is a coping mechanism to de-stress and regulate.

In many ways, age regression is a form of self-hypnosis, where you enter a trance-like state to achieve mental relief.

There is a hypnotic therapy technique that involves a therapist initiating age regression but has been critiqued for its tie to false memory recovery. Voluntary age regression is different as it is not for memory recovery or necessarily done with a therapist.

Since there is not enough literature to conclude whether voluntary age regression is healthy, the subject remains controversial among therapists. Some worry that it is a state of avoidance to distract from difficult processing, whereas others believe it’s a healthy coping mechanism that allows the individual to return to homeostasis.

I agree with this second school of thought, where as long as it’s being practiced safely, I think there are health benefits.

Age phenomena

Age regression is a small piece of much broader “age phenomena.”

The one that age regression is most commonly compared to is age play. Age play is a sexual kink dynamic where two consenting adults usually pretend to be a child and caregiver. However, age play can be any age, and some will play out other dynamics involving being older than they are, etc.

Age play has a negative stigma because many view it as tied to pedophilia. Age play does not involve minors and is usually done for the power dynamic and level of care the “caregiver” provides the “little.”

This can be confusing compared to age regression because many littles in this dynamic describe “little space” as an age regressor would, where they are cognitively similar to the age they are roleplaying. The most significant difference is that age play is for sexual intent, whereas age regression is strictly not.

Another commonly confused term is “little alters.” Little alters are alters in a DID/OSDD system that is cognitively like children and often stuck in time. Littles do not regress, they are generally permanently that age. Regressors, however, revert back to the adult age they are when the session is over.

The last confusing term is age sliders. Age sliders are also unique to DID/OSDD systems, and they describe alters that are not a set age but switch ages depending on the circumstances. They may regress, but they stay that age cognitively until they decide to slide back. Some can also slide to be older than they are, so it flows in both directions.

While many of these terms are used interchangeably like “littles”, “little space”, “caregiver” and “regress”, context is important for determining the type of age phenomenon being discussed. Depending on whether discussing systems or non-systems, sexual or non-sexual, you can determine whether what is happening is age regression or something else.

Benefits of age regression

Age regression can be very beneficial for establishing a good relationship with a caregiver, engaging the parasympathetic nervous system to calm down, return to a state of homeostasis, and heal the neglected needs of your inner child. It can help process difficult emotions or as a form of temporary escape.

It can also be powerful in engaging play, which improves brain functioning, connection, and well-being. Especially when someone has experienced childhood trauma, play can become a foreign experience, and returning to a childlike state can help facilitate this.

How to safely age regress

I’ve mentioned safety several times in this article. What does age regressing in a safe way entail?

The most significant safety consideration is regressing alone vs. regressing with a partner (referred to as a caregiver in the age regression community). Regressing alone gives you more freedom to do whatever you need in the space and prevents harmful dynamics from forming. However, you lose out on the connection to a caregiver, and it can be harder to exit if you’re unfamiliar with your own triggers.

Regressing with a partner gives you the experience of being taken care of and can be a powerful bonding experience. Many adults are uncomfortable taking on this role, which may force someone to look online or in other public spaces for a caregiver. This is where safety really comes into question.

While most age-regression spaces forbid sexual content, many predators lurk on the forums looking for vulnerable individuals under the guise of non-sexual regression. That’s why it’s crucial to vet the person you want to regress with. I would highly discourage minors from looking for caregivers. For this reason, it’s much safer to regress by yourself. Never bring a non-family adult into your regression if you’re under 18.

Another safety concern is that you should not be in little space when interacting with children, as this violates the boundaries between adult/child relationships. Even if you may feel cognitively similar in the moment to the child, you have the brain and body of an adult. Little space should be achieved in your own time, in a designated environment.

As for regressing by yourself, a big part is letting go of feeling like you’re doing something wrong. Our society looks down on children, so people are critical when an adult desires to act childlike.

One of the most helpful ways of regressing is using kids’ toys and materials to help enter little space.

I set up my closet with a soft rug and rainbow lights. I replaced the door with a shower curtain and a comfy chair to give me the space to regress.

Some of the products that I would recommend:

• Adult pacifier
• Chew necklaces
• Adult coloring book
• Sippy cup
• Axolotl Onesie
• Cat plush
• Glow in the dark stars
• Rainbow lights
• Soft rug
• Comfy floor chair

Entering and Exiting Little Space

Something to watch for when trying little space is what takes you in and out of it. You should choose activities and items that will help you regress in a controlled manner and take you to a comfortable level. There’s no hard and fast rule on how to get there. You’ll just have to observe your own state as you regress. I’d recommend starting with items or activities you enjoyed doing as a child.

The other important part of regression is to have triggers to pull you out. That way, if there’s an emergency or an interaction you have to be an adult in, you can quickly come out of the headspace. After all, if you think of this as hypnosis, it would be very irresponsible of a hypnotist to leave you hypnotized without pulling you back out.

Some exit triggers could be entering a new room, engaging in a more complex task, having a ritual for putting away your little space stuff, setting a timer that signals the end of regression time, counting up from 10, or having a cool-down activity like playing with play-dough to re-gain your mental capacity if you have time.

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Age regression can be an amazing tool for healing a wounded inner child and regulating the emotional demands of adult life. Understanding that age regression is a healthy, non-sexual coping mechanism can help fight the stigma against it.

Different Types of Flashbacks in PTSD and Complex Trauma

After a stressful event at work, I sat in the hall gasping for breath. I rationally knew what had happened. I had been yelled at, which triggered my PTSD. That didn’t stop my body from shaking and going through the panic of feeling helpless to save myself.

Talking about triggers in popular culture sounds like people being so sensitive to little events. You hear it thrown around as a buzzword and politicized as a way to diminish valid emotional reactions.

Trigger refers to an event or experience that reminds you of a traumatic event in your life. It brings up painful emotions.

Many years ago, I thought of triggers as their own PTSD symptoms, separate from flashbacks or other symptoms. Flashbacks were those “video clip” moments where your brain forces you to watch in vivid detail. That’s how they were described in all the resources I could find. I wasn’t familiar with complex trauma at the time.

Then I learned about emotional flashbacks. As the term implies, emotional flashbacks are emotion-focused flashbacks where you experience similar emotions to a traumatic period in time without necessarily getting clear images or somatic experiences.

While sitting in this hallway at work, I was having an emotional flashback triggered by the event. It was like being a child again, helpless and afraid. I likely would have regarded the situation as a panic attack a few years ago. But panic attacks aren’t tied to specific trauma triggers.

I tried looking into the different types of flashbacks further. If there were visual flashbacks and emotional flashbacks, were there other types?

The scientific literature didn’t have much to offer for variations on the “typical” flashback, reliving the moment in detail.

PTSD research has focused on single trauma cases, especially since, in the U.S., the DSM-V doesn’t have a classification for complex trauma. Often when going into a new therapy office, I have to indicate which trauma is my “worst trauma” since many of our therapy models rely on dealing with the singular root trauma. There isn’t room to see trauma as compounding, reducing trauma to very defined events of what can count as trauma.

Since practice falls behind research, it hasn’t caught up with the current understanding of things like minority stress, “social traumas,” or other complex traumas.

So, it’s not terribly surprising that research on types of flashbacks is nonexistent.

With all of that in mind, this is an article on a blog. I can try my best to provide a theory based on the current literature, but that theory is not scientific (yet).

To understand flashbacks, we need to understand the senses.

What are the senses anyway?

Oh! That’s an easy one. We learn this in kindergarten – eyes, ears, mouth, nose, and touch. Later on, we may have been exposed to other senses like vestibular (movement awareness) and proprioception (spatial awareness).

Often these are introduced as an accepted understanding of the world. The issue is that they’re phenomenological. And whenever you’re dealing with classification, it’s really tricky to say with any certainty that your classification system is an accurate representation of the world. As a consequence, a lot of the accepted “science” is a bit hazy, and mostly proposed theories with backing for some of the most major.

For example, Aristotle is credited to have first categorized the five senses. Other neurologists have identified and supported other systems. But depending on who you talk to there can be between 5-53+ senses.

This graph by New Scientist does a good job illustrating what senses are generally accepted in science. It also highlighted what “radical” senses have been proposed and a conservative understanding of the senses.

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So, why does this matter to our discussion of flashbacks? Flashbacks are categorized by an individual’s somatic/sensory experiences, which requires a solid agreement on what senses count in that experience.

Flashback categories

CW: The following sections contain brief examples containing a variety of traumas.

A study compared flashbacks to regular auto-biographical memory. It found that flashbacks contained more visual, sensory, emotional, and other perceptual content than autobiographical memory. To people that have experienced traumatic flashbacks, this is far from surprising.

From examining the available literature and through my own experience, I’ve divided the types of flashbacks into Primary Sensory, Vestibular, Proprioceptive, Interoceptive/Emotional, Nociceptive, and Cognitive.

While these types of flashbacks may stand alone, most flashbacks are going to contain multiple types. The categories can be thought of as “Sense-Focused” flashbacks instead of as the only sensory experience of the flashback.

Primary sensory flashbacks

These flashbacks are what are most typically studied. They include the five senses as the focus.

The previously mentioned study found that visual information was the most common, followed by auditory for people experiencing flashbacks. Smell and taste were relatively rare. Touch falls under proprioceptive, so I’ll examine that more there.

Primary senses are the easiest to understand regarding flashbacks, so I won’t provide examples.

Vestibular

Vestibular-focused flashbacks are flashbacks that focus on the experience of movement. Motion can relate to the position and speed of you, people, or things around you.

Examples of vestibular-focused flashbacks may feel like hypervigilance, where you feel like your aggressor is following you. It may be like feeling the speed of a car coming at you, the feeling of body parts moving towards you, or your own body moving. It could also explain physiological descriptions of flashbacks like feeling dizzy, nauseous, off-balance, or like you’re falling.

Proprioceptive

Proprioceptors are nerve endings present throughout your whole body that identify things like touch, pressure, and your body in space.

Proprioceptive flashbacks may feel like someone or something touching you, like your body is present in that traumatic moment, weight on your body, or your skin crawling. It can also happen when someone touches you somewhere triggering, causing an acute sensation like being back in that moment.

Interoceptive/Emotional

Interoception is a wide array of internal experiences, including emotions, sense of time, and internal processes like blood pressure or hunger.

Primary emotions like fear, helplessness, etc., are more common in flashbacks than secondary emotions like guilt or anger.

Interoceptive flashbacks may feel like you’re experiencing the emotions from the trauma. In triggering your fight or flight, it may feel similar to the pounding heart and higher blood pressure you experienced at that moment. It commonly affects your sense of time, like moments are disconnected like a dream. Feeling like you’re in that time is also an interoceptive response.

Nociceptive

Nociceptive is the system that senses pain. A study found that individuals who went through a traumatic event experienced pain after the event. They also experienced pain later when recalling the event.

Nociceptive flashbacks are characterized by pain in areas that may have been affected by the trauma or stress-related pain. It can appear unexplained and may be written off as “psychosomatic.” If you only started having pain following a traumatic event, it’s worth considering that the trauma likely affected your nociceptive system.

It could also relate to other descriptions of pain during a flashback, like feeling like you’re burning, shocked, or being pulled apart.

Cognitive

Cognitive flashbacks are not a sensation so much as a pattern of behavior. A CBT therapist might tell you to examine cognitive distortions after a traumatic event, like feeling like people are out to get you, etc.

I think it is worth considering that this is a type of flashback. You may have distinct thoughts and related behaviors that you experienced during the trauma. It may also describe compulsive actions like trauma re-enactment, which may result in thinking you’re gaining control or can prevent the trauma.

Cognitive flashbacks may also affect your mental understanding of a situation like you’re back in the trauma or thoughts like “I deserve this.”

How autism interacts with trauma

With all the different systems involved in flashbacks, it’s important to note that autistic people have a much higher likelihood of over 40% (this varies greatly across samples, but all agree that it’s much higher than the gen pop) vs. 4% in the general population to have probable PTSD.

The reasons for this are unclear, but it’s theorized that autistic individuals encounter a lot more traumatic social situations and non-DSM-V traumas. Non-DSM-V traumas are any events an individual feel was traumatic but are not currently considered traumatic under diagnostic criteria. Bullying, mental health problems, and cumulative minority stress may be considered non-DSM-V traumas.

Since assessment for PTSD is not built around autistic communication, there can also be an underdiagnosis of PTSD in autistic individuals.

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Autism is characterized by an “abnormal” perception of sensory information. It also has many co-occurring conditions that affect perception, like alexithymia, hyperphantasia, and synesthesia.

A recent study indicated that Grapheme-Color Synesthesia, where individuals associate numbers or letters with colors or images, is associated with PTSD. Sensory systems play into the way PTSD symptoms affect an individual.

I couldn’t find any literature indicating whether autism affects the severity of PTSD symptoms, but there was evidence indicating PTSD affected autism symptom severity. Things like social skills and other emotional regulation skills were affected by PTSD, creating the appearance of more pronounced autistic symptoms as a result.

There needs to be more research into how the somatic experience of autism interacts with the experience of PTSD. Until we have more research, it is unclear how being autistic may affect flashbacks.

An exercise for flashbacks

While many coping skills can be helpful in dealing with flashbacks, I’ll leave you with my favorite.

The technique is called “what’s different?”. In the flashback, you ask yourself, “what’s different?”. You keep naming different things about the room until your body returns to the present. It can be anything like “it’s colder”, “there’s this person with me”, “the walls are a different color”, “I’m laying down”, etc.

While it sounds simple, it can be beneficial during flashbacks to remind yourself where you are.

How Do I Know if I’m Experiencing Burnout?

I’m burned out. Between the constant grind of school and work, moving, and the current state of my country, I am completely drained.

I am not alone. In 2021, 79% of U.S. employees reported experiencing work-related stress. Nearly 3 in 5 reported being negatively affected by work, including lack of energy, motivation, and cognitive fatigue.

There are many reasons for stress to pile up in modern life. Having constant access to the news 24/7, being isolated in individualistic cultures, collective traumas like the pandemic, a culture of productivity, and our personal history all contribute to this mass feeling of exhaustion.

What is burnout?

Burnout is a syndrome, not a disorder. This means that any person can experience it at some point in life and generally can process it without intervention from a professional.

To count as burnout, it needs to have three dimensions A person needs to be exhausted, experience cynicism or depersonalization, and have a negative self-view of performance.

Burnout is talked about in the literature solely as related to work. It was first coined to explain the collection of symptoms common among therapists and other service workers that experience chronic stress. Presumably, stressors outside of work can also cause burnout.

Burnout vs. trauma vs. depression

Burnout has a lot of shared symptoms with trauma and depression. It can make it difficult to pinpoint what the cause of the problem is and get proper treatment. Many people use the term burnout when they’re actually experiencing other issues.

The chart above is not exhaustive, and specific symptoms are subjective in where they fall.

Shared characteristics are exhaustion, depersonalization, cynicism, irritability, anxiety, helplessness, headaches, withdrawal from social, and numbness or emotional outbursts.

Some key differences about burnout are that it is usually short-term, that you can pinpoint the source of the stress, and that self-care can prevent it. You can also start with burnout, which leads to depression if prolonged enough.

If your symptoms last a while, you’re experiencing suicidality, you’re getting intrusive thoughts and flashbacks from the source of stress, you have physiological changes, or you’re feeling down most of the time, you should seek professional help. This would indicate you are not experiencing burnout but are experiencing something else.

Common causes of burnout

Something that is not often discussed in the context of burnout is that it is mainly organizational. We typically put it on people as their responsibility to fix their burnout when the organization has a climate that leads people to burnout.

Sweden provides employees paid time off for burnout and other stress-related illnesses. Burnout researchers found that although they got this time off to rest, many employees still didn’t want to return to the workplace. You cannot fix a poor organizational structure or fit by taking time off.

In one study, employees rated their bosses and found that for every point increase in leadership score, there was a 7% decrease in burnout and an 11% increase in job satisfaction.

The most common work structure factors that lead to job satisfaction or burnout are:

• Workload – how much you’re doing
• Reward – work incentives/meaning
• Control – how much autonomy you have
• Community – the work culture and relationships
• Fairness – if employees are treated equally
• Values – your personal values vs. the company’s

If any of the above areas is poor in a given work environment, you will experience stress and less job satisfaction.

Autistic burnout vs. occupational burnout

While autistic and occupational burnout shares a name, the two are distinct. Autistic burnout is a relatively recent term, so the clinical literature is sparse, but the available research points to autistic burnout being longer lasting (up to years), decreased tolerance to sensory stimuli, barriers to treatment preventing relief, and issues with living independently.

Autistic people can also experience occupational burnout, contributing to autistic burnout. The symptoms look similar, but autistic burnout is more severe and enduring.

Like other forms of minority stress, contributions to autistic burnout are the cumulative load of expectations combined with systemic barriers to treatment Things like masking, transitions, dealing with the debilitating parts of autism, and social expectations fray the rope of stress management. Being dismissed by others, poverty, poor boundaries and self-advocacy, and not taking a break causes no relief from the stressors.

More research needs to be done on the condition and the best recovery methods. The early research on autistic people’s perspectives indicates that setting boundaries, asking for help, doing wellness activities, and recognizing autistic traits/diagnosis all alleviate autistic burnout.

Solving Burnout

You’ve tried all the self-care under the sun, and you’re still burned out. You’ve been told repeatedly that you need to take time off to solve your problems when that would only lead to more problems. You’re stuck in a cycle of waking up, dreading work, going home, dreading work, and going to bed.

I get it. Burnout is really hard. And unfortunately, there isn’t a magical solution.

You cannot self-care your way out of burnout. Self-care is meant to be preventative, not an intervention.

The first question you have to answer is: is it me or my job? If you look at the lists above and see that your company is missing several crucial dimensions, it may be time to start job hunting. Trying to solve burnout when the organizational problem is like that art installation where the robot is trying to clean up a constant pool of blood.

If it’s not an organizational problem, here are some tips that can help.

• Disconnect from your phone. Set digital wellness timers, limit the content you’re seeing, and take a break from the news.
• Prioritize responsibilities. Think of your responsibilities as juggling balls. Some are made of glass, and others are made of plastic. Figure out which ones are glass and focus on making sure those don’t drop. You’ll be fine if you drop the plastic responsibilities for a bit.
• Take your breaks at work. Use PTO. Think of it as investing in your productivity.
• Talk to someone, preferably a therapist. Verbally processing your situation can help you realize what will work.
• Have a physical outlet. Our bodies naturally try to physically shake off stress, but we often inhibit it. Animals shake in the wild to relieve acute stress.
• Do the wellness activities you can. You can’t do everything, but choose what’s most important.
• Set time between responses. Most communication doesn’t require an immediate response.
• Engage the parasympathetic nervous system. “Tricking” your body into calming down will boost your energy and mood.
• Do nothing. Boredom can be beneficial in sparking creativity and letting your mind rest.

Remember, you are worth more than your job. Your inherent value is not tied to your productivity. You are worth just as much when you’re burnout as when you’re at your peak productivity.

I Don’t Want to Cope: A List of Therapy Tricks Without the BS

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CW: Brief descriptions of childhood trauma.

I sat in my therapist’s office at 16, soft spa music lilting in the background.

Breathe in, 2…3…4…, Breathe out, 2…3…4…

I followed her directions, but I couldn’t help but roll my eyes. I had been assaulted a year prior, my parents were in the process of a messy divorce, and I had lost almost all of my friends in a short period.

And this woman wanted to solve that with breathing?

I hated going to therapy. It was a waste of time. I was tired of BS tactics to try to “regulate” or whatever.

Another therapist had erroneously suggested I had BPD. Queue the big book of worksheets and attempt to “fix” me instead of the traumatic environment I was in.

I saw another therapist that told me I was too dysregulated to do EMDR. She presented the “window of tolerance,” this imaginary window of emotions that you can realistically regulate, and extremes on either end of extreme dysregulation. The next 6 months of therapy with her consisted of chastising me for not being in my “window of tolerance” and any progress squashed by her enormous case-load resulting in her not remembering what we had done session to session.

And that’s not even getting into my traumatic inpatient experience.

I began to think I was the problem. Therapist after therapist failed to help me. I was an “extreme case.” A case no one wanted to take because I had a severe mental illness, something many therapists are not truly equipped to handle.

With an industry that was supposed to help me, why was I struggling so hard to find a therapist? I was told that was the solution. But none of their “tricks” worked on me.

Eventually, I met my current therapist. I had never understood people telling me I just had to “find the right therapist” before I had met her.

I saw progress in a short period that exceeded all of my therapy combined. She used many of the same techniques as the other therapists (breathing exercises, trauma-focused CBT, etc.), but suddenly they were successful.

How can the same technique that didn’t work be successful? I didn’t understand until I got further in my psychology courses.

Therapeutic Rapport > Therapy Technique

One of the most significant concepts I learned in my Bachelor’s program was The Three C’s of Resilience presented in Change 101 by Bill O’ Hanlon.

Resilience to psychologically damaging events requires connection, contribution, and compassion.

In short, you have to feel connected to your community, feel like you can contribute to the world, and be in relationships that allow you to fully express yourself and be met with compassion for your experiences.

This rang true for my own journey to resilience, and I quickly saw how my therapist played a crucial role in that.

Therapeutic rapport, building a relationship with a client through unconditional positive regard, is key to success in therapy. And it’s one of the biggest reasons (in my humble opinion) to do the work to find a therapist if you have the means.

The techniques themselves (the grounding exercises, cognitive techniques, or other mindfulness practices) can be helpful, but don’t do much when your problems extend beyond “cognitive distortions.” Unlike Cognitive Behavioral Therapy (CBT) would lead you to believe, your problems aren’t all in your head. There’re real problems in the world you’re dealing with.

My favorite philosophy book by Susan Brison discusses how the violent sexual assault she went through left her with a broken sense of self. She discusses how having a narrative of trauma and telling it allows for a re-integration of that fractured self. A supportive therapist that you connect with can be the audience to that challenging event, mitigating any risk and helping you heal yourself.

It’s also why a bad relationship with a therapist can be so damaging. If your self-narrative is met with judgment, coldness, or indifference, you internalize that. It makes it difficult to heal. You lose connection and compassion.

In a perfect world, all therapists would be helpful, open-minded, and compassionate. Unfortunately, we don’t live in one.

Doing the Work on My Own (and you can too!)

Luckily, most techniques therapists use can be found on Google or in a library. That doesn’t mean you’ll be able to apply them with the same skill as a therapist, but ultimately therapy is only successful if you can find a way to make the techniques work for you.

Since everyone is different and many therapies take a one-size-fits-all approach, my experience hating all mentions of “mindfulness” is not unique.

For a while, I was without insurance and couldn’t afford housing, much less a therapist. It was a luxury, something only people who already have their life together could do. Mental illness makes it hard to work, not working makes it hard to afford basic life necessities, and not having basic life necessities aggravates mental illness. And so, the vicious cycle continues.

During this time, I made progress without a therapist. I figured that I had all the tools at my disposal, why not therapize myself?

(Note: I am not saying do this INSTEAD of therapy. This is meant to be a guide only if a therapist is unavailable to you or as supplemental to therapy. There are some risks of doing therapy homework by yourself, like no barriers stopping you from pushing yourself too far or not having someone present if you’re at risk of harming yourself. Exercise extreme caution and keep someone close to you in the loop with what you’re doing.)

I delved into self-help books and autobiographies, examining how someone with extreme trauma went from completely falling apart to a functional human being.

List of Coping Skills and Why They Work

Mindfulness

Mindfulness is beaten like a drum for coping skills. It’s often accompanied by images of uncomfortable chairs, gurus, and boredom. Mindfulness is often a rigid process, and it seems like there’s a “right” way to do it.

The truth is, mindfulness can be many things you wouldn’t even think of. We naturally turn towards mindfulness in our lives to help us calm down.

Mindfulness works by engaging the parasympathetic nervous system. This relaxes the body and helps essential processes. It doesn’t matter how you’re mindful, just as long as you are fully aware in the moment. It also works well for dissociation.

Mindfulness techniques you might not think of:

• Eating a fine meal and really savoring the flavor
• Sucking on sour candy (my favorite are jolly ranchers for this) – can also be done with spicy or minty foods
• Riding a roller coaster and being aware of how you feel
• Writing in a journal or typing in a notes app
• Creating a piece of art
• Listening intently to a new (or favorite) song
• Holding your breath
• Ecstatic dance or dance that makes you aware of your body
• Metacognition (e.g., I am on the couch, reading an article, I feel thirsty)
• Self-hypnosis (youtube videos)
• Driving in silence
• Stimming breaks
• Stepping outside
• Blowing bubbles
• Small amounts of pain – pinch your forearm and observe the sensation (don’t do this if you think it will be a self-harm trigger)
• Pet an animal
• Walk barefoot
• Holding instant hot or cold packs
• Scream in your car or isolated place
• Build a lego set

Vagus Nerve Stimulation

This is one of my new hyperfixations because it is SO COOL. The vagus nerve is a nerve that runs through your body that controls your heartbeat and has a part in the autonomic nervous system.

You stimulate this nerve subconsciously every day by completing different activities. It can also be a handy trick for reducing anxiety because it reduces your heart rate and can help kick the parasympathetic nervous system in gear.

It is important to note that if you’re prone to heart attacks, manual stimulation (particularly the modified Valsalva) of the vagus nerve can be risky without a doctor present.

Things that stimulate the vagus nerve:

• Modified Valsalva Maneuver – a maneuver used in medicine to slow down the heart
• Cold showers, putting your face or hands in ice water
• Pooping (no, really)
• Meditation or prayer
• Singing or chanting (this is part of why “om” is chanted during meditation)
• Laughing
• Massage (here’s how to give yourself a massage)
• Hugging (yourself, a stuffed animal, or a loved one)
• Cough
• Sit-ups

Environment Changes

If you’re in an unsafe environment, it can feel like life is hopeless. While completely changing your life situation takes a long effort, small things can help you feel safer.

One of the protective factors for people in difficult situations is a sense of control and a sense of purpose. You can control the smallest things and see positive psychological benefits.

Environment changes:

• Create a YOU space. Wherever you can go to make a safe space, create it. It may be your room, your closet, the local coffee shop, Mcdonalds, a friend’s house, a park, a classroom, a car, or anything else where you can get away. Having a safe destination can make a big difference in maintaining some level of stability.
• Purchase a non-lethal weapon
• Get a pet, even something as small as an ant farm
• Get a plant
• Volunteer for a cause you care about (think mutual aid, what would you want help with?)
• Create a portable coping kit
• Set a goal and create a to-do list to accomplish it (can be silly like learning to do the splits)
• Create a safety plan (who you would call, what you need to grab, and things that help you calm down)
• Dye your hair (even one strand or the bottom with help from a friend)
• Donate something
• Make an eco-system

Distractions

Sometimes nothing works. You’ve tried all the coping mechanisms you can think of and you’re still overwhelmed. It’s okay to distract yourself in a healthy way before you can get to a place to confront the experience or emotion.

Distraction is good when you’ve tried other things and they haven’t worked or your experience is so distressing you need to buy yourself time to calm down.

Healthy distractions:

• Video games
• TV or a movie
• Watching cartoons (be aware this can trigger littles if you’re a system)
• Talking with a friend
• Exercise
• Going for a walk
• Making art
• Watching comedy
• Baking or cooking
• Hobbies
• Go to the library
• Coloring
• Do something outside the house
• Wreck this journal

Recommended Resources

• The Neurodivergent Friendly DBT workbook
• The Diagnostic Criteria for Complex PTSD (C-PTSD): A Beginner’s Guide
• A list of a bunch more ideas for “nontraditional mindfulness”: 101 grounding techniques
• A free Acceptance and Commitment therapy resource: ACT lessons
• A book you can buy: Art therapy workbook
• A free list: 100 Art Therapy Exercises
• The complex PTSD workbook
• Autobiographies of people who have been through similar circumstances (I personally like A Teenager’s Journey, Scared Selfless, and The Glass Castle)

Let me know in the comments if there are any resources I missed!

Catatonia – More Than Just Freezing

My heart races as I freeze, my whole body flexed in an uncomfortable position. I cannot move or speak, and I am stuck staring ahead. This feels like sleep paralysis, but I’m awake?

It feels like I should be able to move. I command my legs and arms to move, but nothing happens. My brain is trying desperately to maintain this illusion of control.

Like sleep paralysis, I have the urge to scream, but nothing comes out. The more I fight, the worse I’m pulled into this sense of helplessness. It’s a waking nightmare.

I’m experiencing catatonia.

Over time, catatonia becomes another mental health symptom I greet with resigned familiarity.

At least 1 in 10 people with severe mental illness will experience catatonia at some point.

Despite this, information on catatonia is not widely available. I didn’t learn the name for my catatonia from any doctor or therapist. I had to actively search to find a name for what I was experiencing.

Who Experiences Catatonia?

Catatonia is a prominent feature in schizophrenia (up to 35% of people with schizophrenia). It is classified under psychotic disorders but “can occur in the context of several disorders, including neurodevelopmental, psychotic, bipolar, depressive disorders, and other medical conditions” (DSM-V, 2013).

Nearly one-third of people with bipolar have it, roughly 3-12% of autistic people have it (across multiple studies), one small sample found 87% of people with Tourette’s met the criteria, and in one sample of inpatients with catatonia, 57% had experienced childhood trauma (ACEs). Psycho-physiological symptoms, BPD, dissociative amnesia, and paranormal experiences may also be correlated with catatonia.

What is Catatonia?

While they are under the same definition in the DSM-V, catatonia is often split into two categories. There are two main types of catatonia, akinetic and excited.

Akinetic is the most common. It is characterized by at least three of the following symptoms:

• immobility
• mutism
• withdrawal
• refusal to eat
• staring
• echolalia
• echopraxia
• atypical inflexible postures (posturing)
• resistance to movement
• repetitive movements
• declining requests or not responding for no apparent reason (negativism)
• grimacing

Excited type may be characterized by any of the symptoms in akinetic type but is also characterized by agitated psychomotor behaviors, which may express as meaningless movements or vocalizations and may result in self-injury or aggression.

Considering the prevalence of catatonia in autism, there are significant implications with excited catatonia type. Self-harm and aggression may be expressions of catatonia in autistic people, which further raises ethical concerns for behavioral interventions if catatonia is not considered as a differential diagnosis.

In extreme cases, there may be malignant catatonia which can be lethal. This is generally descriptive of drastic physiological changes (like blood pressure and hyperthermia) in catatonic episodes or other complications like malnutrition from a prolonged inability to eat.

Catatonia exists on a continuum of severity ranging from minutes to weeks. Historically catatonia was only diagnosed if it was extreme, but now it is considered commonly associated with many mental and medical diagnoses.

Treatment for Catatonia

Treatment for catatonia typically uses electro-convulsive therapy (ECT) or benzodiazepines. In addition to these treatments, psychological therapy also seems to help some people with catatonia. Transcranial magnetic stimulation (TMS) is a potential treatment for catatonia, though the evidence is preliminary.

For less severe forms of catatonia, formal treatment may not be needed. Catatonia is not an extreme enough symptom for me to need treatment for it. Things that have helped me personally are grounding exercises and anxiety coping mechanisms, as anxiety from catatonia can often aggravate it.

If you experience catatonia, you are not alone. Since the condition is not well known and carries some stigma, it can feel very isolating. But it’s far more common than people realize.

Please let me know your experience with catatonia in the comments or reach out to me through the contact form.

A Professional Educator’s Guide to Dissociative Identity Disorder

(Infographic Below)

Finding accurate information on DID as a professional educator can be challenging due to widespread misinformation and under-recognition. Use this guide to help inform your curriculum and your practice.

DID Systems are incredibly vulnerable

Approximately 61%-72% of DID patients attempt suicide, and 34-38% engage in self-harm (Brand, 1997). Samples of people with high levels of trauma have also been related to increased substance abuse, risky sexual behavior, and decreased life expectancy (Felitti et al., 1998). This is why educators must be informed about the condition and spread scientifically supported information to future clinicians.

DID patients are waiting >3 years for diagnosis

25% of dissociative disorder patients had >10 years delay to get a diagnosis, and 57% had a > 3-year delay (Leonard et al., 2005). This is striking compared to the 1.3 year average for anxiety and mood disorders (Jorm, 2012).

DID Myths Vs. Facts

Myth

• Therapists create DID, and acknowledging alters makes symptoms worse.
• DID is overt, you can easily tell when a person has it.
• DID is incredibly rare.
• DID is a dubious condition.
• Integration is the only proper treatment for DID.

Fact

• DID is formed from trauma and can only be successfully treated by acknowledging alters (5th ed.; DSM–5; American Psychiatric Association [APA], 2013; Brand et al., 2014).
• DID is primarily covert, which is why the DSM-V criteria was expanded to include self-reported identity states (APA, 2013).
• DID affects approx. 1.5% of the population, or ~5 million Americans (APA, 2013).
• DID is well-established in research and can’t be replicated fictitiously (Brand & Chasson, 2015).
• Integration can be beneficial but not practical or possible in all cases (Ringrose, 2011).

The Iatrogenic/Sociocognitive Model is Harmful and Demonstrably False

Only 55% of clinicians believe DID is a valid diagnosis despite scientific evidence (Leonard et al., 2004). It’s no surprise that there are considerable delays in diagnosis and treatment.

Edit: 40% of clinicians were unable to identify DID from a clinical vignette. This directly correlated with their skepticism of the disorder (Perniciaro, 2014). It’s no surprise that there are considerable delays in diagnosis and treatment.

The false belief of DID as an iatrogenic condition has led to under-diagnosis, rampant misinformation, and lack of research. There are no excuses for clinicians or educators to assert this belief still, considering the extensive literature supporting the trauma model and disproving the socio-cognitive (APA, 2013; Brand et al., 2014; Loewenstein, 2018).

Conclusion

It can be challenging to get accurate information as a professional educator on Dissociative Identity Disorder with the medical and cultural attitudes surrounding DID and the lack of research and education. As a professional educator, you directly influence the way future clinicians will treat patients with the disorder, which is why it’s essential to ensure the information is accurate. DID is a valid, scientifically supported disorder that is more common than many clinicians believe. DID patients are vulnerable and experience significant delays in treatment which actively harms this population. Luckily, as an educator, you can help change the stigma around DID and support it as a traumagenic condition, assisting in shaping the future of DID research and treatment.

References

American Psychiatric Association. (2013). Diagnostic and Statistical Manual of Mental Disorders, 5th Edition: DSM- 5 (5th ed.). American Psychiatric Publishing. https://doi.org/10.1176/appi.books.9780890425596.dsm08

Brand, B. (1997). Establishing Safety with Patients with Dissociative Identity Disorder. Journal of Transnational Management Development, 2(4), 133–155. https://doi.org/10.1300/j130v02n04_07

Brand, B. L., & Chasson, G. S. (2015). Distinguishing simulated from genuine dissociative identity disorder on the MMPI-2. Psychological Trauma: Theory, Research, Practice, and Policy, 7(1), 93–101. https://doi.org/10.1037/a0035181

Brand, B. L., Loewenstein, R. J., & Spiegel, D. (2014). Dispelling Myths About Dissociative Identity Disorder Treatment: An Empirically Based Approach. Psychiatry: Interpersonal and Biological Processes, 77(2), 169– 189. https://doi.org/10.1521/psyc.2014.77.2.169

Felitti, V. J., Anda, R. F., Nordenberg, D., Williamson, D. F., Spitz, A. M., Edwards, V., Koss, M. P., & Marks, J. S. (1998). Relationship of Childhood Abuse and Household Dysfunction to Many of the Leading Causes of Death in Adults. American Journal of Preventive Medicine, 14(4), 245–258. https://doi.org/10.1016/s0749- 3797(98)00017-8

Jorm, A. F. (2012). Mental health literacy: Empowering the community to take action for better mental health. American Psychologist, 67(3), 231–243. https://doi.org/10.1037/a0025957

Leonard, D., Brann, S., & Tiller, J. (2005). Dissociative Disorders: Pathways to Diagnosis, Clinician Attitudes and Their Impact. Australian & New Zealand Journal of Psychiatry, 39(10), 940–946. https://doi.org/10.1080/j.1440- 1614.2005.01700.x

Loewenstein, R. (2018). Dissociation debates: everything you know is wrong. Controversies in Psychiatry, 20(3), 229– 242. https://doi.org/10.31887/dcns.2018.20.3/rloewenstein

Perniciaro, L. A. (2014). The influence of skepticism and clinical experience on the detection of dissociative identity disorder by mental health clinicians

Ringrose, J. L. (2011). Meeting the needs of clients with dissociative identity disorder: considerations for psychotherapy. British Journal of Guidance & Counselling, 39(4), 293–305. https://doi.org/10.1080/03069885.2011.564606

The Great Big List of Sensory Coping – What I Wish My Parents Knew Pt. 1

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Pt. 2

When I was 8, my parents took my family to Disneyland. I remember meeting Disney princesses in my Snow White princess dress, being invited on stage to fight Darth Vader, and swallowing about a gallon of seawater trying to learn how to boogie board. It truly was the trip of a lifetime.

My mom is a very go-go-go type of person, so she pushed us from activity to activity, wanting to experience Disneyland to the fullest. My dad was the type of person who liked to stage large family photos (his special interest at the time was photography). Family photos often included me holding a screaming child, standing in the same place for an hour, and squint-smiling as the sun shone directly in my eyes.

Together they were an unstoppable duo of go-wait-go-wait, trying to get the most out of the money they spent during the 2008 recession. It’s easy to feel pressured to have the maximum amount of fun when you’re trying desperately to create a memory-forming experience.

At one point, my mom dragged me into the bathroom, begging me to use the toilets, but I sat down on the floor and cried. “It’s not scary,” she reassured me, but the looming monster of automatic toilets begged to differ. I had a meltdown on the bathroom floor, my mom frantically trying to calm me down while equally stressed parents passing by watched the unfolding “tantrum” with a judgemental look.

To me, it felt like the world was ending. I was hungry, tired, needed to pee, and my mom was trying to get me to use automatic toilets (how dare she?!). I was terrified of the noise and the abruptness. It had been a long-waged war between us to get me to use automatic toilets in public.

She flipped open her guidebook and tried to find toilets at Disneyland that weren’t automatic. She found one bathroom in all of Disneyland that didn’t have automatic toilets installed.

Our family ran down Main Street, rushing to get to the bathroom. I went in and did my business, relieved.

For the rest of the trip, we walked over to that bathroom regardless of where we were.

It’s funny looking back now because I was so obviously autistic. But back then, as recent as it is, girls (read AFAB) weren’t diagnosed with autism. I was just “quirky.”

My parents handled some of my autistic behaviors well, and others… not so much. If I could go back and give them a guide on what to do differently, here’s what I wish they would have known.

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Sensory Coping

Learning sensory coping as an adult solved my “panic attacks” overnight.

What is sensory coping? Sensory coping is any sensory intervention that helps the person regulate sensory stimuli. This can be both the addition or removal of sensory experience.

One of the biggest “a-ha!” moments with sensory coping was realizing how vital oral stimulation is to help me regulate. It is one of the less acceptable ways of seeking sensation because of the association with childishness.

I sucked my thumb until I was 5. I would have done it longer, but my mom trained me out of it using aversives. “You’re too old to be sucking your thumb!”

When thinking about it critically though, what is the actual harm in children or adults using safe objects in their mouths to cope? Nothing really, it’s just not socially acceptable.

An autistic teenager I mentor chews on the rubber tires on his toys. His mom came to me in exasperation and said, “Why is he doing that?! How do I get him to stop?! He’s too old for that.”

I smiled and said, “If you want him to stop, give him something to chew on.” I helped her find a chew necklace on Amazon.

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When considering sensory coping, you need to understand the person’s unique triggers, sensations they enjoy, and the type of sensation they naturally seek. Never force a sensation someone is expressing discomfort towards.

Auditory Coping:

• Music. Everyone I’ve ever encountered has a type of music they like. Try cycling through different genres (even ones you don’t listen to)
• Ear plugs. Noise-cancelling headphones can be great during a meltdown or rising sensory-overstimulation. High fidelity ear plugs are great if you can’t stand bulky noise-cancelling headphones.
• ASMR can be enjoyable to some people
• White-noise or other non-content noise. One kid I knew liked standing next to the outdoor A/C units because he found the noise calming.
• Stop talking. Try communicating without speaking for a bit. I’ve heard this can be especially helpful for people who have selective mutism.

Oral Coping:

• SAFETY: Make sure to regularly sanitize chew toys/etc., especially during the pandemic. Keep them in a designated place when not in use and don’t let others touch them. Watch for items that can become choking hazards or that someone could injure themselves on if a part breaks off.
• Chewies – chew jewelry/chew toys. There are chew toys that exist that are meant to be subtle and ones that are different textures and materials. You can find them on Amazon or from autistic creators. One of my favorite autistic creators of subtle chew/fidget jewelry is The Divergent Minds Club.
• Safe objects – straws, pencils, clothing, toys, etc. I know it seems frustrating when you see your child chewing on objects, but it is serving a purpose. Give them designated items based on what they normally chew on if they don’t like chew toys. A friend of mine likes chewing on plastic straws because they’re a different texture than the silicone toys and keeps a few in their office.
• Ice – one warning is don’t chew ice (it’s bad for teeth) but sucking can provide a lot of sensory stimulation
• Baby Ice Teethers – if you like chewing ice, this is a great substitute
• Gum – have them choose the flavor. I really like the dessert flavors the Extra brand makes.
• Food that imitates inedible items – edible playdough, chocolate “dirt”, candy rocks

Visual Coping:

• Youtube videos – the videos marketed for “baby sensory”, “sand sensory”, “visually pleasing”, “surprisingly satisfying” can all be great places to look
• Hourglass, color, or “visual toys” – lava lamps, bubble hourglass, sand toys, kaleidoscopes, Jacob’s ladder, I Spy book, light toys, and color changing optic lights
• Projectors – there are fairly inexpensive light show projectors or you can easily make your own
• “Beer goggles” – the type of goggles used in high school classrooms to warn students against drinking and driving, or any glasses that distort the world
• Eye masks
• Simulating an odd perspective – fish eye lense, going somewhere high up, spinning, tutting
• Smart devices – you can get smart lights that are able to dim or change color and connect to smart home devices like Alexa

Tactile Coping:

• Water, sand, and sensory tables
• Dancing, exercise/movement, trampolines
• Fidgets – I’m a big fan of this fidget toy set online or you can make your own.
• Squeezing – autism “steam-rollers” (though these are pricey), full body hugs, hand or foot massages, head squeezes (can be good in place of headbanging), using objects around like pushing your body against a wall
• Things to throw your body against – mats, beds, wearing a helmet, wrestling, punching bags, foam pits, diving
• Sensory swings – in my living room this looks like a hammock chair and stand (no screwing into the wall needed)
• Body suits
• Bodies of water – swimming, bathtub, etc.
• Weird/Pleasant textures – soft rugs/blankets, lotion, walking through the fabric aisle at Walmart, items that vibrate, smooth/bumpy items, temperatures (hand warmers or ice packs)
• Activities that keep your hands busy – knitting, baking, puzzles, video games, drawing, rubix cube
• “Safe space” – a small area that there’s a lack of stimulation or only pleasant tactile stimulation available
• “Medicinal Herb” – if legal and of age

Olfactory (Smell) Coping:

• Candles, incense
• Scratch and sniff stickers/markers
• Nose plugs – ones that you can still breathe through are usually less irritating
• Perfumes/lotions of a preferred scent
• Cooking fragrant foods – cookies, spicy foods, anything with cinnamon
• Scented toys – stuffed animals, bubbles, play dough,
• Essential oils – these can be put on diffuser necklaces to be worn around
• Scent diffusers

Hopefully, you find some of these suggestions for sensory coping helpful. Consider putting these things in a “coping kit”.

If my parents had been equipped with how to help me sensory cope, I likely wouldn’t have developed as severe of anxiety pre-diagnosis. Sensory coping is an essential part of understanding autism and should be a staple for every autistic kid. These are all things you can try at home, but if you are looking for professional help, Occupational Therapy can be a great way of learning how to cope with sensory issues. Some areas offer OT services to children and adults, so check your local resources.

Let me know which ideas you found most helpful! For more information on why sensory coping is important check out pt. 2.