November last year I was invited to give a short talk at Bishop Grosseteste University, to a PGCE cohort, describing my lived experience of autism. As Darkside begins a new project dedicated to autistic women, I thought it might be a good idea to share the transcript of that talk.
It combined research and experience into a compelling narrative that I hope challenges the prevailing social construct of autism as ‘impairment.’ A construct written by those in transference of their own failings in empathy and theory of mind, and a construct that fails catastrophically to actually effect positive change in the lives of autistic people.
I’ve been doing a lot of research in preparation for this talk. And these are the words that I’ve come across when reading about autism. These are the words that you’ll have come across when reading about autism. These are the words that professionals use to define autism to the general public.
What about these words? Here’s some back story.
In 2014 I rented space in a gym and started Darkside Training, women-only strength and powerlifting gym. These are some of the reviews that I received in those first few months of coaching. Five years later, this year in fact, I was diagnosed with autism.
Autism is defined as a triad of impairments. Deficits in imagination, social communication and social interaction. Professionals have taken the prevailing social constructs, defined them as normal and labelled difference as deficit. Difference as impairment. Difference as lesser than.
Neurotypical simply means neurologically typical, so in other words ‘normal.’
This was written by an autistic woman, she has a website devoted to the study of the neurobiologically typical, including a diagnostic scale if you’d like to measure your neurotypical traits. In her website the world is turned upside down with autism the prevailing social construct and NTs (neurotypicals) the poor, pitied unfortunate. Now this illustrates quite nicely not only the autistic capacity for sarcasm, but also the absurdity and malleability of accepted social structure.
Autism is framed from the perspective of neurotypical observation and understanding, so conventional wisdom assumes that those with autism desire the same social constructs as neurotypicals and are simply deficient in their ability to obtain them. Neurotypicals observe behaviours and construct theories and ignore completely the necessary truth in autistic reality and perception.
This is the Sally-Anne Test. Meet Sally, meet Anne. Sally puts her ball in the basket and leaves the room. Anne moves the ball from the basket to her box. When Sally comes back, where will she look for the ball?
This is called a false belief test and has been used, particularly by Simon Baron-Cohen, a supposed ‘specialist’ in autism research, to ‘prove’ that autistic people do not have theory of mind – theory of mind is the ability to understand that other people have their own thoughts, values and beliefs. Autistic people will often say that Sally will look in the box, rather than the basket, for her ball.
I have issue with the presumptions of this test, particularly with regard to its validity – are they measuring what they think they’re measuring? Firstly, they’re using imaginative play with children who do not voluntarily engage in imaginative play and then the syntactic form of the questions posed by the test is some of the most complex in the English language. So that when autistic and deaf children are given a false belief test administered visually rather than verbally, they score higher than non-autistic hearing children.
Simon Baron-Cohen has then described ToM as a core component of humanity that is impaired in autistic people. I am less human than he is. He posits that by lacking ToM autistic people must then lack empathy, a dangerous position when empathy is also considered an essential human trait.
He is also responsible for the ‘extreme male brain’ hypothesis, deciding that systemising is a biologically based male trait and empathising is a biologically based female trait, which is still, dangerously, impacting on the diagnosis of women with autism. Because if women are biologically programmed towards empathy, which autistic people are deficient in, then how can women be autistic?
Simon Baron-Cohen has a lot to answer for.
I have studied theory of mind for 31 years. I have observed, learned and understood enough to pass as normal since my twenties. The converse cannot be said to be true however. Other people have not observed, learned or understood my behaviour enough to pass as autistic. The thought would never even occur to them.
I love this quote, from Olga Bogdashina, because it illustrates perfectly the dichotomy of perception.
And actually, if we’re going to use theory of mind as a concept, then we have to recognise that if autistic people don’t have theory of neurotypical mind then neurotypicals certainly don’t have theory of autistic mind.
Autism professionals don’t have theory of autism parent mind and autism parents don’t have theory of autism professional mind.
None of us understand each other.
And instead of using that lack of understanding to imply a lack of humanity, how about we use it to marvel at the complexity and multiplicity of human experience?
Let’s look at executive function, the ability to manage ourselves and lives, to plan and carry out tasks. I have excellent executive function. I manage 11 coaches and 200 women training in over 50 sessions each week. I organise large events and write successful grant proposals. I know what’s happening every hour of every day in that gym and I manage it well.
Then in September, as I attempted to integrate into university life, my executive function declined, dramatically, I struggled to focus, to finish tasks, to remember sequences. And it took weeks out of this environment for that to come back.
It wasn’t just the time or task commitment of university, because I’ve worked 70/80 hour weeks for the last 5 years, that’s entrepreneurship. My decline in executive function wasn’t just about time, or lack thereof.
Ogawa et al., studied chronic stress in children with and without autism. ASD – autism spectrum disorder and TD – typically developing. They used strands of hair to test for cortisol, stress levels, as hair will show a long term impact, not affected by acute situations. They found that children with autism had higher levels of chronic stress than those without, and that that chronic stress impacted on the autistic children’s spatial working memory, an aspect of executive function.
This chronic stress arose from the environment that those children were placed within, and its effects on executive function suggest that executive function deficits are not an inherent biological trait of autism.
And so those autistic people who do struggle with executive function, is it a side effect of attempting to fit into a society that clearly isn’t interested in autistic perception? What would happen if those autistic people had the freedom to create their own environment? Moderate their own sensory input? Set their own appropriate boundaries?
Because much of an autistic’s life is spent suffering through unnecessary sensory overload, navigating ambiguous social contexts and enduring the ignorance and ambivalence of those who apparently, have the empathy that we do not.
This all culminates in some serious social and organisational harm.
In the general population it is men who are at the highest risk of suicide, they accounted for ¾ of UK deaths by suicide in 2018, and suicide is the most common cause of death for men aged 20 – 49.
In the autistic population however, women are at most risk. Women with autism are 13 times more likely to die by suicide than their non-autistic counterparts. Not just think about, not attempt, but actually die. Women with autism are 13 times more likely to DIE by suicide.
And particularly relevant for us as teachers, children with autism are 28 times more likely to think about or attempt suicide, 28 times more likely.
And even when we removed actual autism diagnoses from the research population, elevated autistic traits are still associated with suicide attempts.
It’s only very recently, that researchers have tried to find out why autistic people are at such a high risk.
Non-suicidal self injury is fairly self explanatory, let’s talk camouflaging.
In order to engage in camouflaging, you must have insight into your own behaviours, how these may be negatively perceived by others, and then have a strong motivation to adapt your social behaviour to be accepted.
Now, does this sound like someone with social deficits?
Would a socially deficient person be able to understand how their behaviour is observed by others and then change that behaviour in order to fit in? How can a person who lacks theory of mind understand that they are being negatively perceived? How can a person without empathy be socially motivated to perform acceptable behaviour?
To accept that autistic people camouflage, you have to then question the prevailing theoretical models of autism.
But of course, constantly hiding who you are has its downsides. Anxiety, depression, loss of identity, self-hatred.
This camouflaging is particularly dangerous for women. The ratio of autism diagnoses in men and women is currently around 3:1, 3 men for every 1 woman. However, this is for autism as a whole spectrum. When we remove intellectual disability and focus only on high functioning autism, studies are suggesting that the ratio is closer to 9:1. 9 men for every 1 woman.
If I went to the doctor with my prevailing symptoms of generalised anxiety, depression, disassociation, hypersensitivity and social anxiety, I’d be prescribed propranolol or citalopram. Not referred for an autism assessment. How many of those missing women in the diagnostic ratios have been misdiagnosed with psychiatric conditions?
And then when we try to explain how we’re actually feeling, no one is actually listening. This is a quote from a participant in the first research article here, when talking with a therapist. The therapist expected her to react in the same way as a neurotypical person, even knowing that she was autistic. The therapist could not step outside of their own experience in order to empathise with their patient’s experience. So who has theory of mind now?
This over-reactive sensory perception I think is key to autistic experience. Certainly in my experience. The majority of observable social, communication and executive function deficits can be traced back to sensory overload. Repetitive behaviour and adherence to routines is an anxiety response due to the stress of sensory overload. And we’re just starting to see research showing the relationship between autism and PTSD (post traumatic stress disorder) as exposure to sensory overload for extended periods of time constitutes actual physiological and psychological trauma to the autistic person.
This PTSD link could also explain the autistic lack of episodic memory (our autobiographical memory) which is often, rather offensively, viewed as lack of self awareness or self reflection.
And it could explain anxiety that is more akin to the adrenaline fight, flight or freeze response. A physical manifestation of panic and trauma.
Put a neurotypical person in a war zone, and they may come back to normal life with observable autistic traits. Maybe normal life is a war zone for the autistic person.
We each have a social imperative to effect meaningful change in our communities. To support, empower and understand the differences that make us uniquely human. There is no longer any excuse for wilful ignorance, or arrogant misinterpretation.
I also showed an excerpt from the video below, as its depiction of sensory overload via augmented video is actually quite accurate.
Questions or comments? Feel free to drop me a message xx