Autism, Trauma, and Stress

This recent study on autism and PTSD offers some relatable paragraphs about stress and trauma.

It is well documented that individuals with Autism Spectrum Disorder (ASD) experience high rates of psychiatric co-occurrence, with other conditions—attention-deficit/hyperactivity disorder (ADHD), anxiety, and depression being the most commonly diagnosed (Joshi et al., 2012). Recently it has been suggested that individuals with ASD are at an increased risk of experiencing potentially traumatic events and being significantly affected by them (Haruvi-Lamdan et al., 2018; Kerns et al., 2015).

A review that examined trauma and PTSD among adults with intellectual impairments discussed the difficulty to differentiate between stressful life events and traumatic events, and argued for broadening the examination of different types of events and experiences that may potentially be perceived as traumatic (Martorell & Tsakanikos, 2008). Another review, by Kerns et al. (2015), indicated that individuals with ASD may experience a variety of stressful situations (e.g. intense sensory stimuli, changes in routine, medical ordeals) as traumatic. Various characteristics of sensation, perception, social awareness, and cognition, which are unique to individuals with ASD, may determine which events would be experienced by them as traumatic. A recent article discussed this issue and focused on traumatic subjective perception of three groups of patients who are at risk to developing PTSD, one being ASD (Brewin et al., 2019). The authors argued that these groups’ PTSS are often overlooked and suggested adding an “altered perception” subtype to PTSD criteria in the future. Specifically, it is possible that social stressors are a significant source of vulnerability for individuals with ASD (Haruvi-Lamdan et al., 2018; Hoover, 2015). Several studies suggest that social demands are more often appraised as stressful by individuals with ASD compared with typical individuals (Gillott & Standen, 2007; Jansen et al., 2003). Individuals with ASD experience greater social isolation and distress compared with their typical peers (Tani et al., 2012). Therefore, it is reasonable to assume that some social interactions are experienced as particularly stressful, and even traumatic, among this population.

Source: Autism Spectrum Disorder and Post-Traumatic Stress Disorder: An unexplored co-occurrence of conditions – Nirit Haruvi-Lamdan, Danny Horesh, Shani Zohar, Meital Kraus, Ofer Golan, 2020

Via:

Glad to see a topic important to the community getting some research and validation.

Related:

In other words, autistic people are indeed traumatised by a wider range of things than the teams were expecting. And diagnostic teams should be considering PTSD after a wider list of possible triggering events.

Source: Ann’s Autism Blog: Autism, Bullying, Post Traumatic Stress Disorder and Behaviour. The links?

People who enter services are frequently society’s most vulnerable-people who have experienced extensive trauma, adversity, abuse, and oppression throughout their lives. At the same time, I struggle with the word “trauma” because it signifies some huge, overt event that needs to pass some arbitrary line of “bad enough” to count. I prefer the terms “stress” and “adversity.” In the book, I speak to the problem of language and how this insinuates differences that are not there, judgments, and assumptions that are untrue. Our brains and bodies don’t know the difference between “trauma” and “adversity”-a stressed fight/flight state is the same regardless of what words you use to describe the external environment. I’m tired of people saying “nothing bad ever happened to me” because they did not experience “trauma.” People suffer, and when they do, it’s for a reason.

Source: Psychiatric Retraumatization: A Conversation About Trauma and Madness in Mental Health Services – Mad In America

This scene is quite similar to how I experience an autism sensory overload. When sounds, lights, clothing or social interaction can become painful to me. When it goes on long enough it can create what is called a meltdown or activation of the “fight-flight-freeze-tend-befriend” (formerly known as “fight or flight”) response and activation of the HPA axis; a “there is a threat in the environment” adrenaline-cortisol surge.

This makes seemingly benign noises a threat to my well-being and quite possibly real physical danger to my physiology. Benign noises become painful, and if left unchecked, enough to trigger a system reaction reserved for severe dangers. This is what days can become like on a regular basis for myself and many on the spectrum.

“Let me stick a hot poker in your hand, ok? Now I want you to remain calm.”

That is the real rub of the experience of sensory meltdowns. The misunderstanding that someone with Autism is just behaving badly, spoiled or crazy. When the sensory overwhelm is an actual and very real painful experience. It seems absurd to most people that the noise of going to a grocery store could possibly be “painful” to anyone. So most people assume the adults or children just want attention, or they can’t control their behavior. In work situations I get accused of all kinds of things. And when I leave a noisy situation like a party to step out to take a break, people will notice that I’m “upset”. They will assume or worry that I must be upset at something or someone. And that’s just if I do take a break. If I can’t take a break or get my life out of proper oscillations and can’t avoid noise or sensory/emotional overload, then I can get snappy, defensive, irritated and under very unfortunate circumstances even hostile.

What the stress of noise means, in the autism’s world of an over-sensitive physiology and ramped up stress experiences, is that that pain is warning of us of real damage being created in our bodies. So this anxiety and reactivity isn’t necessarily just perceived but is actually happening. We are not being overly dramatic or a brat (what those with Autism are often accused of). Damage to our physiology is what noise can actually do.

Source: Autistic Traits and Experiences in “Love and Mercy” The Brian Wilson Story – The Peripheral Minds of Autism

The Sensory Hell of the Lunchroom

Needless to say, the dining hall, as well as being busy, crowded and a source of multiple odours, was also very noisy, as trays were picked up and clattered back down, cutlery jangled, and metal serving dishes clanged against metal hot plates. Meanwhile, the children, squeezed into rows of tiny seats bolted on to collapsible dining tables, grew louder and louder to make themselves heard over the racket. Indeed, the lunch queue alone can be the place where sensory problems ‘can turn into a nightmare’ (Sainsbury 2009, p.99). Perhaps unsurprisingly, therefore, all of the child contributors to this book – Grace, James, Rose and Zack – identified noise and crowds as being the most difficult aspects of school from a sensory point of view.

Indeed, the school environment can present autistic children with a multi-sensory onslaught in terms of sounds, smells, textures and visual impacts that constitutes both a distraction and a source of discomfort (Ashburner, Ziviani and Rodger 2008; Caldwell 2008). There was also clear evidence from my own study that sensory issues, and noise in particular, can be highly exclusionary factors for autistic children in schools.

Source: Inclusive Education for Autistic Children: Helping Children and Young People to Learn and Flourish in the Classroom

A recent discussion with neurodivergent coworkers brought up how overwhelming school lunch was for many of us, and likewise the group dining at our company meetups. I like to use the Brian Wilson biopic, “Love and Mercy”, to demonstrate how overwhelming dining at a crowded table can be. It has a very relatable dinner scene where Wilson is overwhelmed by the overlapping noises of utensils and conversation.

Getting lunch is a trip through “sensory hell” for many neurodivergent students.

Sensory Hell is the opposite of something being stimmy. It is utterly and totally unbearable.

Maybe you’re thinking of the classic scenario of the autistic person melting down in a busy grocery store, and it’s true that grocery stores are often considered tools of the devil by autistic people. But anything can be a sensory hell.

Source: 7 Cool Aspects of Autistic Culture | The Aspergian | A Neurodivergent Collective

Design for neurological pluralism. Let neurodivergent students eat without overloading them, melting them down, and burning them out.

This scene is quite similar to how I experience an autism sensory overload. When sounds, lights, clothing or social interaction can become painful to me. When it goes on long enough it can create what is called a meltdown or activation of the “fight-flight-freeze-tend-befriend” (formerly known as “fight or flight”) response and activation of the HPA axis; a “there is a threat in the environment” adrenaline-cortisol surge.

This makes seemingly benign noises a threat to my well-being and quite possibly real physical danger to my physiology. Benign noises become painful, and if left unchecked, enough to trigger a system reaction reserved for severe dangers. This is what days can become like on a regular basis for myself and many on the spectrum.

“Let me stick a hot poker in your hand, ok? Now I want you to remain calm.”

That is the real rub of the experience of sensory meltdowns. The misunderstanding that someone with Autism is just behaving badly, spoiled or crazy. When the sensory overwhelm is an actual and very real painful experience. It seems absurd to most people that the noise of going to a grocery store could possibly be “painful” to anyone. So most people assume the adults or children just want attention, or they can’t control their behavior. In work situations I get accused of all kinds of things. And when I leave a noisy situation like a party to step out to take a break, people will notice that I’m “upset”. They will assume or worry that I must be upset at something or someone. And that’s just if I do take a break. If I can’t take a break or get my life out of proper oscillations and can’t avoid noise or sensory/emotional overload, then I can get snappy, defensive, irritated and under very unfortunate circumstances even hostile.

What the stress of noise means, in the autism’s world of an over-sensitive physiology and ramped up stress experiences, is that that pain is warning of us of real damage being created in our bodies. So this anxiety and reactivity isn’t necessarily just perceived but is actually happening. We are not being overly dramatic or a brat (what those with Autism are often accused of). Damage to our physiology is what noise can actually do.

Source: Autistic Traits and Experiences in “Love and Mercy” The Brian Wilson Story – The Peripheral Minds of Autism

See also:

Good Vibrations, Bad Vibrations, Overwhelm, and Meltdown

I spent the evening with Polyphonic’s video essays on Fairytale of New York, Walk on the Wild Side, Wish You Were Here, Tangled Up in Blue, The Thin White Duke, The Chain, Deals with the Devil, Freddie Mercury’s Voice, Flea’s Bass, and John Bonham’s drums. Polyphonic offers captivating and well-produced looks at legendary songs and musicians.

The episode on Good Vibrations, Brian Wilson’s pocket symphony, had me bringing out the headphones to disappear into the version of the song from Smile.

Headphones and curated good vibrations are how I cope with sensory overwhelm, especially when I’m out in the world, outside my Cavendish bubble, where I’m unable to control my context. Smile and Pet Sounds are great albums in which to go for a sensory swim and let the world dissolve.

The Brian Wilson biopic, “Love and Mercy”, has a very relatable scene where Wilson is overwhelmed by the noise of utensils and conversation at the dinner table.

Overload, meltdown, outburst, and retreat. That escalation is a feature of my life, at times a daily one. As meltdown approaches, everything feels like shouting, everything is too much. Sounds and social interaction become painful, and adrenaline and anxiety surge, humming through my body and senses, overloading wires insufficient to the immensity of tidal flow. The dinner table scene is a good representation of how I experience overwhelm. A noisy, crowded dinner table is a personal hellscape.

I came across this piece on Autistic Traits and Experiences in “Love and Mercy” that explains further.

This scene is quite similar to how I experience an autism sensory overload. When sounds, lights, clothing or social interaction can become painful to me. When it goes on long enough it can create what is called a meltdown or activation of the “fight-flight-freeze-tend-befriend” (formerly known as “fight or flight”) response and activation of the HPA axis; a “there is a threat in the environment” adrenaline-cortisol surge.

This makes seemingly benign noises a threat to my well-being and quite possibly real physical danger to my physiology. Benign noises become painful, and if left unchecked, enough to trigger a system reaction reserved for severe dangers. This is what days can become like on a regular basis for myself and many on the spectrum.

“Let me stick a hot poker in your hand, ok? Now I want you to remain calm.”

That is the real rub of the experience of sensory meltdowns. The misunderstanding that someone with Autism is just behaving badly, spoiled or crazy. When the sensory overwhelm is an actual and very real painful experience. It seems absurd to most people that the noise of going to a grocery store could possibly be “painful” to anyone. So most people assume the adults or children just want attention, or they can’t control their behavior. In work situations I get accused of all kinds of things. And when I leave a noisy situation like a party to step out to take a break, people will notice that I’m “upset”. They will assume or worry that I must be upset at something or someone. And that’s just if I do take a break. If I can’t take a break or get my life out of proper oscillations and can’t avoid noise or sensory/emotional overload, then I can get snappy, defensive, irritated and under very unfortunate circumstances even hostile.

What the stress of noise means, in the autism’s world of an over-sensitive physiology and ramped up stress experiences, is that that pain is warning of us of real damage being created in our bodies. So this anxiety and reactivity isn’t necessarily just perceived but is actually happening. We are not being overly dramatic or a brat (what those with Autism are often accused of). Damage to our physiology is what noise can actually do.

Source: Autistic Traits and Experiences in “Love and Mercy” The Brian Wilson Story – The Peripheral Minds of Autism

As I write this, I’m coming down from a long day punctuated by meltdown. I feel scoured and hollowed by adrenal exhaustion. Time for a swim in the good vibrations of someone who understands.