Alternative Title: “Shove that in your “Theory of Mind” and smoke it”
[Content note: Physical and psychological violence towards autistic people; misconceptions and stereotypes about autistic people; marginalisation and othering of autistic people]
Television New Zealand (TVNZ) has a docuseries currently airing called “I AM”
I’ve watched the whole series and it generally seems to be great. It’s sharing the stories of marginalised New Zealanders and what life is like for them. Three episodes so far have covered living with HIV, living as a transgender woman and, the interest of this blog, “living with Asperger’s.”
[Note: I could write an entire post about the linguistic gymnastics used regarding person-first/identity-first language regarding autism. Another time perhaps. We should respect individual preferences, but also recognise that roughly 80% of autistic people PREFER identity-first – “I am autistic” versus “I have autism.”]
If you have access to this series (On Air or On Demand in Aotearoa), I do recommend it. But, I just have to point out some issues with the “living with Asperger’s” episode. Why? Because that’s what I’ve committed to do – speak up (or write out, or whichever communication I’m using) regarding the realities of autistic life, smash stereotypes, and maybe in small ways make things better for us. Especially for coming generations.
“Asperger’s” is an earlier label for certain people on the autistic spectrum. The most recent version of the Clinical Psychology Diagnostic and Statistical Manual (DSM-V) absorbed a separate diagnosis of Asperger’s into Autistic Spectrum. This was to better recognise that these are not separate conditions, but that the expression of autistic traits varies for individuals.
“I AM: Living with Asperger’s” covers this, and plenty of other information about autism which is TECHNICALLY accurate. However, this accuracy is from a clinical psychological and allistic (non-autistic) viewpoint. So, I have some major points to push back on.
What they always seem to do to us
My first two major issues were with the construction of this episode. I watched this episode first (of the three), and it struck me even harder after watching the other two.
First: In comparison with the other episodes David RS Greer (whose story is shared) does not have his point of view CENTERED.
The power of this docuseries lies in CENTERING the stories of people who are otherwise MARGINALISED. But in the case of Mr Greer, there is more talk about Asperger’s/Autism and Mr Greer from other people than himself. The other two episodes don’t even include expert commentary (more on that later).
This is a particular problem for autistic people and autistic stories. There is a broad, cultural problem (and in fact, it is the story of our LIVES) that we are silenced, ignored, disbelieved and told by others what we are like, instead of being heard or acknowledged about how we experience the world. Because we have difficulties with social and emotional communication (especially spoken communication), there is an assumption that we cannot at all tell our own stories.
We are pushed into silence – something that Mr Greer talks about. He describes people “surrounding him with silence.” They stop talking, abruptly, when he is around. They ignore him. I find it deeply upsetting, that in a documentary that is supposed to centre marginalised stories, they propagate this when it comes to the autistic story.
Beyond upsetting, to the point of harmful for autistic people, is the propagation of the stereotype that we are violent.
Now – I am not for one minute stating that we cannot be violent. We are human. Have you all seen how violent our species is? We are human and have that capability as well. BUT. We are more likely to have violence enacted upon us. If we do act violently, it tends to be motivated by fear, anxiety, and self-defense.
Following from the de-centralisation of Mr Greer’s story, the documentary instead ends up focusing on two violent acts he committed, instead of what motivated them. These violent acts cannot be removed from the story – they are a central part of Mr Greer’s discovery of his Asperger’s diagnosis at 23 years old.
Mr Greer was diagnosed with Asperger’s after he was ambushed by three men who attacked him with a metal baseball bat. Following from years of bullying and maltreatment, Mr Greer carried a knife for self-defence. After he was attacked, he used this knife to defend himself and try to escape. In the fear and confusion of the situation, he severely injures one of his attackers. Police are called, Mr Greer is placed in solitary confinement for four days with limited food and charged with “attack causing grievous bodily harm.” His wounds are not attended to. [There is no mention of the outcome for his attackers.] The following 9 months of Mr Greer’s life were taken up by the court system and consultant psychologists. He received a diagnosis of Asperger’s – which brought a great deal of relief and understanding. He was also convicted of a crime.
See what happens when we centralise the story which should be centered the whole time? This is the documentary I was deeply longing for. TVNZ disappointed me. I could share the whole story for you with Mr Greer centred in the narrative. But, I won’t take any more of his story from him than that previous passage, and I am deeply sorry that I have felt the need to use that portion to demonstrate a point.
The Expert Commentary
Now, it didn’t surprise me that there was expert commentary. We’re talking neurology. We’re talking psychology. I expect it. What surprised me, was that there was no similar commentary in other episodes of “I AM.” In the episode about living with HIV, there was no expert commentary on what HIV is, the medications that were mentioned. No expert insight in the episode about living as a transgender woman into hormone replacement therapy, or from transgender activists. Again, this is decentralising Mr Greer’s story.
The first expert introduced was Tanya Breen, a consultant clinical psychologist who specialises in autism and working with the justice system. Ms Breen excellently explained autism from a clinical perspective. She also did a wonderful job of describing meltdowns, which had previously been consistently described as tantrums.
The biggest issue I had here was when Ms Breen brought in the “Theory of Mind” concept. She describes Theory of Mind (ToM) as it is commonly described.
“People with good ToM understand that everyone has unique thoughts and feelings.”
She then introduces the common misperception that autistic people have poor ToM.
Again, I should probably (and will) write an entire other post on ToM, why it’s rubbish, and why autistic people and allistic (non-autistic people) who work in relevant fields are critical of this awful concept from the research of Dr Simon Baron-Cohen.
For now, I will state this very clearly: This is categorically false. We understand that everyone has unique thoughts and feelings. We have empathy. Sometimes, we engage in this too much, to the point that we worry that our slightest actions have upset someone or caused them hurt.
What we have difficulties with is reading subtle social cues. We have difficulties with filtering and processing sensory and emotional input. We understand individuals have a unique internal experience. Non-autistic people aren’t always direct in their verbal communication, and we don’t assume and attribute additional emotions beyond what you say because – see previous about how we’re having difficulty filtering and processing our internal and external information feeds.
This looks to YOU (allistic people) like we are not empathetic, or don’t understand your perspective. We do. Just sometimes it’s in a different time-stream to what you want it to be in.
The second expert commentary, from Nathan Wallis (neuroscience educator) had me yelling at the television. Now, perhaps my reaction is out of line here. Maybe I’m overly disappointed. Maybe my anger here is misplaced. I don’t think it is, frankly, and I think I’m only inserting this caveat because I’ve been taught by society’s desperate need to modify my behaviour that anger is wrong.
This was the first time I’ve heard of Nathan Wallis, and yes, we are colleagues because I am also a neuroscience educator and science communicator. Perhaps my anger and disappointment is misplaced because I have the added advantage in this instance of also being autistic. But, autistic or not, this colleague did not do his research.
Mr Wallis opens his commentary with “We think of all humans now as being on the autistic spectrum.”
As both autistic and neuroscientist my response is: No. No we absolutely do not.
Next: “Asperger’s was previously someone up the high functioning end of autism.”
Technically true. But, “High” versus “Low” functioning labels are damaging. They are used to divide us, have a history in eugenics, and either dismiss our strengths or deny us supports. This didn’t so much make me angry as just being poor form.
Next: Mr Wallis talks about our (autistic) frontal cortex versus a typically developing frontal cortex with an undertone that ours doesn’t develop. It absolutely does. In fact, since our brain development tends to be more rapid and overly connected, our frontal cortex might get finished sooner (average age for final frontal cortex development is 25).
The term “Neurotypical” versus “Neurodivergent” is consistently used incorrectly. And, used in a similar way to saying “We’re all on the autistic spectrum.” So, let me define these terms.
Neurodivergent refers to people whose course of brain development or general daily function, varies from that which is typical in the majority of the population. It includes (but is not limited to) autism, attention deficit/hyperactivity, schizophrenia, dissociative identities, specific learning disabilities (e.g. dyslexia, dyscalculia), neurodegenerative disorders, a huge number of things.
Neurotypical: Not having one of these neurologies.
Autistic versus non-autistic people, as I’ve used previously in this piece, is the term “allistic.”
So, like I said, up to here this was a lack of research.
Here is the thing that made me angry. Especially because the framing of this documentary focused on violence.
When Mr Wallis was talking about the need for understanding of autism in the justice system and how situations must be re-examined in light of this (yes…I agree up to here…)
“Because that person doesn’t really have free choice. Because their brain is structured to make them more likely to act this way.”
If you’re not screaming along at the TV with me at this point, you might not have been listening. This is flat out horrendous. I always aim for kindness and compassion in my science communication and neuroscience education efforts. This places us as “The violent other.” As quasi-humans who DON’T HAVE FREE CHOICE.
Now, free will is debatable generally, for everyone. Don’t believe that? Buy me a cider some time, we’ll question our lives as “rational actors” together. But for now, as a neuroscientist, as a science educator, and as autistic, Hear Me.
Our brains are NOT structured to make us more violent, nor do we lack control over our behaviour.
Our brains have difficulty filtering and processing sensory, emotional, and communication information.
This makes allistic people think we are weird. Some of them treat us with violence. Enough of them that we think it’s normal.
When you think something is normal, and don’t realise that other people aren’t overwhelmed by their surroundings as you are, defending yourself with the same is rational and reasonable.
When you learn it’s wrong, you don’t feel anger at the people who hurt you.
You feel guilt and shame that you could have behaved that way towards another person.
Shove that in your “Theory of Mind” and smoke it, Simon Baron-Cohen.
And unfortunately, the great analogies Mr Wallis made about the experience of autism just don’t make up for this for me. See how I’ve been trained to sandwich my critique with a compliment? They were great analogies though, I have to say that.
I can do this type of education without being angry. I try not to write when I’m feeling certain ways – it colours it. But I’m also done with sitting back and being silenced, with being othered and treated as a sub-human.
I’m sure the other neuroscience education work Mr Wallis does is probably great. But if you’re in Aotearoa and you want a neuroscience educator for autism – e-mail me?
And, if you’re in Aotearoa, tune in for “I AM.” “Living with Asperger’s” was disappointing, but the series as a whole is hugely valuable.