My goal as an autism advocate is to transform our view of autism to a stress adaptation rather than seeing it as a disorder. Viewing autism as a stress adaptation has the potential to clear up many controversies. It would also explain my amplified experiences and the pervasive nature of how this early, or pre-life, stress re-wired my brain. Seeing autism as a stress adaptation changed the approach I took to balancing my behaviors. Instead of seeing them as character flaws to be admonished, I found ways to balance my stress, learn cues I had been missing, nurture my sensory needs, and build my stress resilience. Furthermore, this new view of autism as a “stress model” will likely lend scientists and researchers insight into what seems to be a vast amount of impossibly confusing evidence.
On the links between autism and PTSD:
I touch on this in “Design is Tested at the Edges: Intersectionality, The Social Model of Disability, and Design for Real Life”, which includes this relevant quote on trauma:
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.
White people in North America live in a society that is deeply separate and unequal by race, and white people are the beneficiaries of that separation and inequality. As a result, we are insulated from racial stress, at the same time that we come to feel entitled to and deserving of our advantage. Given how seldom we experience racial discomfort in a society we dominate, we haven’t had to build our racial stamina. Socialized into a deeply internalized sense of superiority that we either are unaware of or can never admit to ourselves, we become highly fragile in conversations about race. We consider a challenge to our racial worldviews as a challenge to our very identities as good, moral people. Thus, we perceive any attempt to connect us to the system of racism as an unsettling and unfair moral offense. The smallest amount of racial stress is intolerable—the mere suggestion that being white has meaning often triggers a range of defensive responses. These include emotions such as anger, fear, and guilt and behaviors such as argumentation, silence, and withdrawal from the stress-inducing situation. These responses work to reinstate white equilibrium as they repel the challenge, return our racial comfort, and maintain our dominance within the racial hierarchy. I conceptualize this process as white fragility. Though white fragility is triggered by discomfort and anxiety, it is born of superiority and entitlement. White fragility is not weakness per se. In fact, it is a powerful means of white racial control and the protection of white advantage.
I began to see what I think of as the pillars of whiteness—the unexamined beliefs that prop up our racial responses. I could see the power of the belief that only bad people were racist, as well as how individualism allowed white people to exempt themselves from the forces of socialization. I could see how we are taught to think about racism only as discrete acts committed by individual people, rather than as a complex, interconnected system. And in light of so many white expressions of resentment toward people of color, I realized that we see ourselves as entitled to, and deserving of, more than people of color deserve; I saw our investment in a system that serves us. I also saw how hard we worked to deny all this and how defensive we became when these dynamics were named. In turn, I saw how our defensiveness maintained the racial status quo.
…when the autistic children were able to access their strongly held interests, the school staff didn’t need to prompt them anywhere near as much(or even at all), and the children were more motivated, independent and relaxed. Not only did this enable the supporting adult to take on a more constructive role, but the lighter-touch support meant that it was easier for peers to engage with the autistic children too.
…the autistic children in my study were turning to their strong interests in times of stress or anxiety. And there has certainly been a lot of research which shows that autistic children and young people find school very stressful. So it might be the case that when this autistic trait is manifested negatively in school, it is a direct result of the stresses that school creates in the first instance.
In my study, I found that when the autistic children were able to access their intense interests, this brought, on the whole, a range of inclusionary advantages. Research has also shown longer-term benefits too, such as developing expertise, positive career choices and opportunities for personal growth. This underscores how important it is that the education of autistic children is not driven by a sense of their deficits, but by an understanding of their interests and strengths. And that rather than dismissing their interests as ‘obsessive’, we ought to value their perseverance and concentration, qualities we usually admire.
I updated “I’m Autistic. Here’s what I’d like you to know.” with selections from “Respectfully Connected | 10 ‘Autism Interventions’ for Families Embracing the Neurodiversity Paradigm”.
- Learn from autistic people
- Tell your child they are autistic
- Say NO to all things stressful & harmful
- Slow down your life
- Support & accommodate sensory needs
- Value your child’s interests
- Respect stimming
- Honour & support all communication
- Minimise therapy, increase accommodations & supports
- Explore your own neurocognitive differences
The experience of stress is one that is nigh-on universal amongst autistic people, along with the sense of overload (whether sensory or emotional).
Source: So what exactly is autism?
The irony of turning schools into therapeutic institutions when they generate so much stress and anxiety seems lost on policy-makers who express concern about children’s mental health.
As his mom, I know there would have been telltale signs throughout the day. But they’re small clues that can be easily missed, as he would have been largely compliant, so therefore no one would have realized there was any problem. But I know as the day progressed, his complexion would have become paler as the energy sapped out of him with each passing hour.
He may have struggled to eat his lunch due to high anxiety. A nervous giggle would have squeaked out when his teachers tried to speak to him. He would have put his head down on the table during lessons or possibly rocked back and forward on his chair to calm himself down. And as the pressure mounted and the clock ticked toward home time, there may have even been some finger picking and sleeve chewing.
My son shows these signs of stress through his body language and gestures. He can’t always communicate his needs verbally, so they can get missed.
The can be a common challenge facing many children on the autism spectrum. Some children are able to contain their feelings all day at school, with the teacher blissfully unaware there’s a problem. However, the stress hormones are slowly building and building inside. This creates a situation that can put incredible pressure on families— especially if teachers don’t understand or believe what the parents are telling them. So let’s think about it this way for a minute…
We resist, strongly, the idea that stress is best acted on at an individual, case-by-case level. This is a structural problem that can be changed with sufficient political will to change it, and we believe in fighting for that change.
We know that marketisation, casualisation and other workplace inequalities are key factors in stress levels among our members. We know that declining real terms pay and increased workloads are a factor. We believe that the higher education sector as a whole is systemically under-investing in staff, with knock-on impacts for all of us, and we don’t believe that this is anything other than a response to a political climate that has privileged metrics and rankings over human beings.
Mood: Rubrics, behaviorism, surveillance, compliance, and stress aren’t a learning culture worth showing up for.