Perseveration

I write every day.

If I write nothing else in a day, I set aside 30 minutes every evening to write just for the sake of writing. I use a journal and simply pour my stream of consciousness out. I have to do it for three pages, although I don’t limit myself to only three if the flow is good.

During the process of discovering that I’m autistic (link to my discovery story) I learned something very interesting: neurotypical people have quiet time in their minds.

I say neurotypical, because others I know who are neurodivergent but not autistic have also told me their minds are never quiet.

My mind never stops. Ever. I cannot recall (outside of sleep) a peaceful time in my head. Even when there’s nothing in particular to think about, my stream of consciousness is perseverative (this is a term that means something happening over and over, seemingly without end).

Now, I won’t usually be sharing my private journal writing. That’s my private writing. But one day recently I caught a sample of my autistic mind in shut down, perseverating. This is what it’s like in my head.

Writing writing stream of thought writing
I’m doing this because I’m trying to write every day but I’m so wiped right now that I think this is shutdown-ish
Just want input basically.
Bah bah bah
Making random noises in my head
Just watched a stand-up set “Mo’Nique I coulda been your cellmate” and it’s just the closing music over and over
Dah-dah-dah Dah-dah-dah
Can’t even remember what the words were
Dah-dah-dah Dah-dah-dah Dah-dah-dah
I should be stream of thought-ing but just writing that repeating bar over and over and over and over and over and over and over and over and over dah-dah-dah dah-dah-dah

Seems pointless
Perseveration
Perseveration
Perseveration is the game. Perseveration repeating the same.

Dah-dah-dah
rhythms of three
stim-stim-stim
Purple Monkey Dishwasher
Should watch some “Scrubs” again
Don’t have Scrubs
Would it still be joyful?
Have I seen it too many times now?

Charlie Charlie Charlie Charlie
Charlie came in the room
Dah-dah-dah Dah-dah-dah
Water bottle
Still so bad at drinking water. Is that an autistic thing?
Why do we forget or not realise to drink water?
Messy hypothalamus and bodily sensory perception?
Dah-dah-dah Dah-dah-dah Dah-dah-dah
Go! Go!

[Final note: Charlie is my cat]

If I ever seem distracted from the outside, I probably am. By the non-stop random twists and turns of my unquiet inner monologue.

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“I AM: Living with Asperger’s” and centering the autistic narrative

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]

Background information

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.

Sticks and Stones

[CN: This post contains sanist/ableist slurs and references/descriptions of bullying/abuse]

Please, excuse my absence. I know this blogging gig depends on consistency, but at the moment I’m trying to finish off a project seven years in the making.

It’s a project I’m absolutely sick of, over and done with. But it keeps dragging on, and dragging me back into trauma experienced during it. So I end up in a great big cycle of demand avoidance AND hyperfocus. That is – I can only focus on THIS ONE THING and at the same time I have to drag myself through proverbial muck every day to try and progress it.

I watched a fair bit of TV, read some books and slowly slowly slowly managed to finish one part of the thing. This afternoon that part will be completed and it’s one step closer to freedom from it and moving on to new ventures.

Here’s something I wrote once it was all sent away for approval.

Words, Words, Words. I’m so sick of words.

Sticks and stones may break my bones but words can…
Shape how we think about and experience the world
Cause lasting psychological damage
Be used as weapons
(The pen is mightier than the sword)

“Stupid” was the teacher who bullied me for a year
Who, when I broke a wrist in the schoolyard, made me stay in school
Made me keep writing for an entire afternoon

“Crazy” was getting slammed at knee and gut with an airplane chair
When I asked them to get off me and refused consent to occupy my space, told me they had paid for that space
Maybe I should have considered purchasing two seats
Meanwhile, they were taking up three and I tried to make myself fit in two-thirds

“Insane” was every occasion of gaslighting
Too numerous to count
Your experience, feelings, memory are not real
“Did you do something to bring it upon yourself?”

Only if I actively did something by happening to exist

Every other sentence created by other humans, in this world, in which I exist
“It’s crazy!” “That’s insane!” “How stupid!” Idiot, Moron, Mental

Telling me, that’s what I am
The butt of a joke
Not good enough
Everything wrong
Confusing, Surprising, Exciting, Ridiculous, Excessive, Bad decisions, New designs, Bold ideas, Heavy discounts

Are adjectives really so hard?
Or do you just find it easier to slap me psychologically with each sentence?
Remind me of all this trauma?

Oh! But words can never hurt you.

 

Very honestly, I’m not sure the next chance I’ll get to write something for here. I’m about to delve back into the same cycle for stage two of project completion. I hope it won’t take me too long, but you never know. Until next time, Keep fighting the good fight

Gluten free did not treat my autism

Content note: medical stuff, physical symptoms including gastrointestinal and vomit, food, medically prescribed diet, possibly other specific things (I’m sorry, it’s late and I’m tired – please let me know anytime if there’s something you needed)

The trend (and it is a trend) of using gluten free diets to “treat” autism is not exactly new news to me. My coeliac disease reared its ugly head a full five years before I found out I’m also autistic. So I came across this in trawling through gluten free and coeliac stuff (and associated rubbish information) a while ago. A large amount of the rubbish information I refer to is the general feel that gluten free diets are so amazing and cure all ills because gluten is apparently evil and destroying all of our health.

That’s just not true.

So, as someone autistic and on a coeliac compliant diet, I have thoughts. Oh gosh, do I have thoughts. This became a very long piece of writing, so I’ve tried to break it into sections.

First, let’s start with some basics about coeliac disease.

COELIAC DISEASE

Coeliac disease is a chronic, autoimmune condition where exposure to gluten (a protein found in the wheat family of grains) mostly through dietary consumption, results in an attack of the lining of the small intestine. Like many autoimmune conditions, individual symptoms can vary widely. Also like many autoimmune conditions, this results in vast underdiagnosis of coeliac disease in the population.

Coeliac disease is not just a bit of bloating and an upset stomach.

Severe bloating is one of the most common symptoms. When I say severe, think “I suddenly become approximately eight months pregnant and can’t fit in my clothes anymore.”

Upset stomach doesn’t cover the gastrointestinal involvement by about a factor of ten. Severe pain and abdominal cramping to the extent you can’t hold yourself upright, or flat out stay standing usually. Stabbing feelings can occur anywhere within the abdominal region. Any given individual may experience constipation, diarrhea, or switch back and forth between the two. The commonality, regardless of which of these experiences occurs (and we’re going to use the clinical description) are that “stools are large, voluminous and foul smelling.”

Wait, aren’t all stools foul smelling? Why yes.
A more accurate description might be of something that has emerged from the depths of Hades itself. “Foul smelling” is a euphemism, which I suppose I’ve ruined now.

At the other end of the gastrointestinal tract, vomiting, nausea and reflux are common occurrences. From here, mileage starts to vary more widely.

People, including medical professionals, assume that coeliac disease presents with weight loss, or a wasting condition. In reality, approximately 60% of cases present with weight gain.

A skin rash (clinical name dermatitis herpetiformis) is thought to only occur in childhood presentation. Every coeliac adult I know reports this particular symptom. Rash doesn’t quite cover it either. Any allergic type reaction that your skin can have seems to occur. Whatever it happens to look like at the time, it’s painful and itchy. It can also occur from skin contact alone, but that’s not accepted by the medical profession. Apparently the gluten must be ingested, but most coeliacs beg to differ.

Because the major point of attack is the small intestine, any number of “conditions of malnourishment” can occur. The most common (and the only one they seem to test for) is iron deficiency. Others I’ve heard about include potassium, sodium, B vitamins, effects on cholesterol levels, among a host of others. Anything you get from food can be affected by the loss of adequate absorption through the intestine.

Coeliac disease can lead to ovarian infertility (the same doesn’t seem to be true for testicles). This is so common, it’s now suggested that anyone presenting with unexplained ovarian infertility should be tested for coeliac disease.

Most people report “gluten fog” which describes effects on mental function. Primarily this is difficulty concentrating, irritability and extreme fatigue. Some people report additional neurological effects, including me.

Maybe that’s because I’m autistic and my neurology is already different. It’s possible. But that doesn’t mean it’s necessary (although there’s some interesting research to be done at the overlap).

The most common neurological effect of coeliac disease is gluten ataxia. Ataxia is a loss of control over walking. I’ve always been clumsy, but this was to the next level. Mostly, my legs would just collapse. But there were some particularly outstanding strange things. One time, I was teaching a class and moving around the room. I stopped to help a student. I was on one knee, stood up, and turned to start walking in one direction with my upper body. Meanwhile, my legs headed off in the other direction. Those extreme situations were absolutely not normal for me.

I am unsure whether this occurs as a broader neurological effect of coeliac disease, but for me it exacerbated specific speech production difficulties. My general “losing a thread of speech somewhere in the middle of it” and “not able to produce a word before searching through my thoughts and eventually just describing around it” happened with much greater frequency. I also had an increase in jumbling my words, resulting in some rather interesting sentences and contractions.

How did it interact with autistic traits?

I remember the ataxia and speech effects because I am highly aware of my own body and my speech/language. I was an unaware autistic at the time, so I can’t say much with any degree of certainty.

Meltdowns/shutdowns were a daily occurrence. At the time, I thought it was simply because I was so fatigued, stressed and in pain. And that’s true, to an extent. But I wouldn’t have described them as being related to an autistic experience.

I do remember feeling constantly on the verge of snapping. I was starting every day with practically no spoons. Going to work teaching and doing research, juggling medical appointments, not sleeping most nights due to either insomnia or being awoken to vomit. I would get home at 6 or 7pm and just collapse on the couch. I expect my partner would describe plenty of “challenging behaviour” from the time. He was perfectly understanding that I was operating on a negative spoon allowance.

Once I was finally able to go gluten free/coeliac compliant (you have to wait until after having intestinal biopsies taken), everything improved rapidly. Like, about 4 days rapidly. It took a few weeks for constant abdominal pain to clear. I still remember the strange, sudden realisation that the pain had gone, after being in pain for such a long time. It took close to a year for my bodily operations to return to something approaching “normal” for me. Exposure to gluten now flares my symptoms for up to a week as long as it’s only a single meal.

Gluten free trend diets and “treating autism.”

To be perfectly blunt, people who “just decide” to go gluten free frustrate the hell out of me. A gluten free diet, especially a coeliac compliant gluten free diet, is hard to manage, expensive, and largely not catered for outside of your own kitchen.

Gluten free diets are indicated in three medical conditions: Coeliac disease, wheat (or other gluten containing grain) allergy, or irritable bowel syndrome (managed with something called the low FODMAP diet). Gluten free diets are NOT, repeat NOT healthier for you if they are not indicated by one of these conditions. Just like people who eat vegan or vegetarian diets, gluten free and coeliac compliant diets have to be managed to ensure appropriate nutritional intake. A gluten free diet actually increases the risk for specific vitamin deficiencies for nutrition gained from the grains which become excluded.

Unlike the gluten free diet trend, my diet means I have had to learn a lot about cross contamination. This also means I’ve had to generate a script of questions to ask at restaurants to find out if what I’m getting is truly gluten free, or if it’s there to cater to the trend dieters. I have a list of instructions people have to follow if they wish to cook a meal for me.

I can’t eat food prepared in a common deep fryer, cooked in the same cooking water, or toasted on the same grill or in the same toaster. Hands and utensils must be cleaned before coming into contact with food prepared for me. Products containing gluten cannot be on the same dish as my food. It’s not a simple case of just ordering items listed as gluten free or even purchasing products labelled as the same. Both have left me seriously ill.

My gluten free compliance extends to everything that could possibly make it’s way into my mouth. It’s not just food. The big three are medications, personal hygiene products and make-up. I cannot consume ANYTHING that I do not know where it has been or what it has in it. There is no “oh, I’ll just have a little bit, it’s my cheat day.”

And wait for it, if this blog goes any kind of distance in terms of views/reads there’s bound to be a couple of responses, that I will address before they happen. One: “Oh, I went gluten free and it was amazing! It’s the best thing I’ve ever done, I feel so much healthier!” Two: “My child is autistic and we put them on a gluten free treatment diet and now they are great and their autism is so much better!”

First – I believe you. However, it’s not because gluten is evil, everyone should go gluten free, or that gluten is responsible for autistic traits.

In all likelihood, you have coeliac disease (or wheat allergy, or IBS). This might be especially true for some autistic youngsters.

There is a high concurrence of autoimmune conditions with autism. Coeliac disease is most definitely underdiagnosed in the general population. The way it messed with me, an autistic adult who already had a great deal of coping skills, can tell us something about autistic children.

They are in pain. They are confused about why their body is suddenly not doing what it used to and seems to be rebelling against them. They might not be able to describe what’s happening to a professional, plenty of whom don’t seem to recognise coeliac disease when it’s in their office consistently for fifteen months (or more).

Going gluten free doesn’t “work” because gluten is making us all unhealthy. It worked because you, specifically, might have needed that. Likewise, a gluten free diet won’t help with a child’s autism. It will help them with the other gastrointestinal issue, allow them to manage in the world better without pain and stress, and allow them to be adequately nourished. You might perceive this as “less problem behaviours” but it’s really that a problem has been solved for your young person.

Rambling about functioning labels

[Content note: Eugenics, bullying and psychological abuse, mention of food]

Many other autistic people have said it before, and probably better than I can, but functioning labels (“mild” vs “severe” or “high” vs “low” functioning) are damaging.

They are used to gatekeep diagnosis and access to support services (“mild/high”). They are used to dehumanise and tell autistic people we will not have a full or meaningful life (“severe/low”).

It’s a great big false dichotomy anyway. And if there’s one thing I’ve learned over time about false dichotomies, it’s that nothing good ever results from them.

Given that any one autistic individual may have any combination of “mild” or “severe” traits or difficulties, how can only one apply?

Oh! That’s right! It’s a false dichotomy, and not a legitimate classification. It is an ableist concept that seems to be tied to either perceptions or measures of intelligence. This root is deeply disturbing, and ties functioning labels to eugenicist ideals.

What even is intelligence? Even scientists who study the concept struggle to define what they mean by it. At it’s core, it seems to be that human je ne sais quois. That, whatever it is that makes the human animal different from other animals. Which by the way, if you study the mammalian brain in comparison with primate and human brain, is actually not a heck of a lot. It’s a relatively tiny piece of frontal cortex and verbal language/communication.

It’s measured by Intelligence Quotient (IQ), most commonly with a test called the WAIS (Wechsler Adult Intelligence Scale). Individual tasks test a multitude of cognitive capabilities ranging from attention and short-term memory through vocabulary, general knowledge of facts, numeracy and recognising patterns. All sorts.

We know IQ tests are flawed, in multiple ways. One’s score is influenced by level of education and they are biased by class, race/culture and verbal abilities at a bare minimum.

Because the tests are fundamentally verbally administered and responded to, this presents an interesting conundrum given verbal and language processing traits in autistic individuals. It biases the test against those who are non-speaking or have other language processing difficulties (with testing stress an additional factor). Then, autistic individuals with excellent language skills may score highly in vocabulary tests, with an overall score hiding difficulties in another area.

It constantly brings me back to a question of what IQ tests actually measure. Does it just measure general cognitive functions (that we know are present in other brains anyway) but with a linguistic twist? There seems to be this broad, humanity wide tie between “we produce sophisticated verbal language” and “we thus have a special something called intelligence.”

I think I’ve gotten away from myself. And this just shows you how much of a huge, biased mess “intelligence” as a concept and IQ tests are. I can’t process my thoughts into writing, and that’s usually where I find success.

I give up – did any of what I’m trying to get at make sense to anyone? The tests are biased is mostly what it comes down to. But also, what even is this concept? Especially, what is this concept when you bias it so heavily by language – the human bias.

The much deeper problem with this tie that people have to perceived intelligence of others, is that this was used by eugenicists specifically in relation to autism. “High” versus “Low” functioning – based on either perceived or measured intelligence – was used to sort autistic and other disabled people into who could be “useful” and who could be “burdensome.” And then…well. You know what happened next.

It’s just horrific. Let’s stop.

Perhaps an example might help, and I’m the only example I’ve got, so here goes.

I was identified as gifted and talented at eight years old. So that makes me “high” functioning, right?

But also at eight years old, I had absolutely zero friends. I couldn’t relate to any of the kids around me. I had literally no idea what I was doing “wrong” or what to talk to them about in general. I was being mercilessly bullied. I often sat silently, because I didn’t know what to say or didn’t understand the schoolyard conversation going on around me. More often, I played alone. That worked out best for everyone – the other kids didn’t have to keep running away to isolate me, and I didn’t have them being actively nasty to me.
So that’s “severe” functioning problems right?

As an adult, I’ve been employed, gained a PhD and lived independently. So that’s “mildly” autistic right? (Remember how I was not given a diagnosis because I “function indistinguishably…?”)

But also as an adult, I lose the ability to speak (completely) when I’m overloaded and shut down, and come pretty close to that when stressed or exhausted. I forget purchasing food 5 minutes after I’ve done so. I get so distracted that often I stop and ask myself out loud “What am I trying to do?” I injure myself on an almost weekly basis either from clumsiness or not judging my place-in-space appropriately (and watch out if I’m exposed to gluten too). Literally while I was writing this I burned the chicken for dinner because I lose track of time and forgot I need to put timers on. I can’t cope with personal finances. A phone call to an HR department this morning saw me inert for the following three hours. So that’s all “low functioning,” right?

Oh, and as an adult, I’ve still been mercilessly bullied and systematically isolated by others. But when you’re an adult we call that psychological abuse.

You’re so high functioning, you should be able to deal with it, learn to work with them and improve the situation.
But you’re so low functioning that you can’t make eye contact “properly” and no one believes you anyway and thinks you’re lying about how you’re treated.

Do we see how this works yet?

It’s a false dichotomy, based in ableism and eugenics, used as another way to confuse, belittle, divide and deny.

“Not autistic enough” or “severely autistic” is shorthand for “I’m going to ignore you now and deny you the right to be heard.”

Identity Language (Autism Acceptance 27)

am autistic

Not a person with autism
It is not something I have, can pick up or put down as I please
It is an identity, and shapes my identity

I am autistic

I think about brains a lot. I think about how I can think about the object of my thought – that from whence it came.
It’s kind of a trip.

I thought about identifying as “autistic” (identity first), as opposed to “having” autism (person first) only very briefly.
Identity first language just felt right.
And, as so many things, I conceptualised it in terms of the brain.

I spent today immersed in papers about the cognitive neuroscience of identity. I wanted to write about why most autistic people seem to prefer the identity first construction in terms of how identity is constructed in the brain. Apparently it’s a highly novel field of study.

Despite relative novelty, there is already one consistent finding. The medial prefrontal cortex – the part of your brain roughly where “the third eye” would be – is central to self-identity.

How interesting, that science confirms a concept found throughout cultures and history. “I” sits here. Somewhere behind the eyes, at the level of the forehead.

Autism is a whole brain phenomenon. It affects all aspects of how we move in, experience, understand and interpret the world. Including our identities.

am autistic.

One region we can easily tell is a critical node in this differing experience is the frontal lobe, which includes the medial prefrontal cortex, among many other subregions.
One reason this is easy to pick (from a whole brain phenomena, mind you) is the “executive functions” we all seem to report difficulty with. Attention, decision making, motivation and the like.

And our identity.

It is difficult to understand oneself adequately, when others’ feedback tells you differently.
It is difficult to recognise how one might identify, when society is constructed to teach you that this way of being is “unacceptable.”
But, I had no difficulty, once I found the right explanation for my whole experience, in adopting identity-first language.

I am autistic.

What’s more, all the literature I read through today had some interesting underlying themes.
We (humans) create our identity and recognise our identity as ‘self’ in relation to ‘other.’
Heavily involved neurological processes include language and face recognition.
Two more key processes affected in autistic traits.

I am autistic.

We also construct our social identities on what feedback from the “other” tells us, and whether that matches our “self” perception.
The feedback constructing my social identity? Consistently tells me I’m “other.”

I am autistic.

If you have to insist on reminding yourself I’m a person first, you erase my experience. You erase the contribution of the behaviour of society, the “othering” of me in shaping my experience, my understanding, my identity, and the connections in my medial prefrontal cortex.

We are.

Dispel a Myth (Autism Acceptance 22)

[Content note: Vaccination. Anti-Vaccination. The ongoing Wakefield saga. Reminders that autistic people are dehumanised by this. Mention of childhood illness and death. Mention of autism “treatments”]

How many myths are there to choose from? Too many.

But there’s one I’ve been trying to dispel for a long time, ever since I was working under the assumption that I was a neurotypical scientist.

Can you guess which one? There’s one that harms all children, autistic and allistic, and harms their parents and families.

Vaccines Cause Autism.

Short version: NO THEY DON’T

But that isn’t going to be acceptable. Let’s unpack this myth a bit, shall we?

Like all myths, this one starts with a story.

Once, there was a man named Andrew Wakefield. At the start of this story he was a medical doctor working in scientific research.

Wakefield did a piece of research, but he wasn’t satisfied with his findings.
Most scientists or doctors would ask a lot of questions. Why did I find this instead of what I expected? I had a pretty good hypothesis, so was it something in how I tested it? Do I need to go back to the start and do another study, or do I need to reassess my hypothesis? Were all my measurements appropriate?

But, Wakefield wasn’t like most scientists. Instead of asking more questions, he decided to falsify and manipulate his data to show what he wanted it to.
Come now, it’s not unheard of. Not all stories are about the good guy.

So, Wakefield manipulated his data. He manipulated it to show that in a very small sample of children, the MMR vaccine was associated with an increased incidence of autism.

He published this study in a very good scientific journal. Somehow, he got it through peer review. But come now, of course this sometimes happens too. Peer reviewers can’t tell if your data is falsified.

So, this single study came out. Then the news cycle got hold of it. A weak association between vaccinations and the incidence of autism became a causal relationship.

Which brings us to the first point to unpack in this story: A correlation is not a causation.

How does a correlation between the MMR vaccine and autism come about? It’s a matter of coincidental timing, parents who care deeply about their children, and a human brain that forms associations too easily.

Autistic traits in children tend to come to the fore between approximately 2 and 5 years of age. The reason for this is that all children’s brains go through a phase of rapid development around this time. In autistic children, this rapid expansion in neurons and connections is thought to happen “too rapidly.” We become intensely good at some things (lots and lots of good strong connections). But as the expansion is “too rapid” some connections are shaped differently compared to typically developing children. Our (autistic) connections apparently don’t get the same length of time for environmental contributions to shape our brain network, over the course of this expansion phase.

This neurodevelopmental stage happens to coincide with the second dose of the MMR vaccine.

When you get a vaccine, any vaccine, you are told to be aware of side effects. Or watch for them in your children. Common side effects include aches and pains. Less common side effects can include allergic reactions.

Parents care for their children’s health by getting them vaccinated, then care for their children by watching them closely for an allergic reaction. Their increased attention on their child for a period may lead them to notice that their development is varying from their peers.

And our glorious but flawed human brain turns this association into a causal relationship. Because our memories tell us the vaccine came before we noticed the developmental changes. One preceded the other, so our flawed brains tell us “cause.”

But, this is only one of many developmental stages for the brain. It’s one that we can witness reflected in children’s behaviour. But by this point, autistic brains have been developing for at least 2 years and 9 months. Technically, brain development starts at around 25 days in utero, with the closure of the neural tube. This is also the earliest stage at which differences in autistic brains compared with typically developing ones have been identified.

With such a huge separation in the timing of the events contributing to autism, one would be as justified in saying “autism causes vaccines” as “vaccines cause autism.” So, there may be a spurious correlation, but the causal relationship does not exist.

Back to our story…

Some time has passed. Other scientists are skeptical of the finding of the Wakefield study. They are critical of the methods used to draw the conclusions. They cannot at all replicate the finding.

There is an investigation. The fraudulent data is revealed. The original study is retracted.
Wakefield is struck off the medical register. He can no longer lay claim to the title of doctor.

Ongoing studies, eventually analysing data from thousands of children show no association whatsoever between the MMR vaccine and autism.

Two points to make here
The first: Science is never settled on a single study. A single study may produce a result in either direction, for or against a hypothesis. But, when the overwhelming majority of studies show an effect in the same direction, we take it as settled.
The second: Given a large enough sample, you can find a correlation between any two factors. That the huge weight of evidence in huge samples finds no association between vaccinations and autism? That indicates that there is truly no relationship.

Vaccines Don’t Cause Autism.

Back to the story…

Wakefield continues to push his agenda, in light of overwhelming evidence to the contrary. He continues to find financial backers. He makes a film. People defend him and actively fight against one of the greatest public health marvels to come out of the 20th Century.

People’s care for their children is overwhelming, and sadly, easily manipulated.

Wakefield’s successful manipulation campaign results in reductions in vaccination rates. The measles virus easily returns to countries where it was thought to be eradicated. Children die, or are permanently affected by infections that they survive.

Autistic children continue to be born. As they have always done as a normal part of the variation in the human condition. As they did long before vaccines were conceptualised. Convinced these children are “vaccine injured” by Wakefield’s propaganda, incredibly creative, torturous practices, masquerading as “treatments” emerge. Autistic children die, or are permanently affected by the “treatments” they survive.

I’m sorry dear reader, did you think this was a happy story? Or perhaps not happy, but where good triumphs? It’s only the latest version of the dehumanisation of autistic people. The newest iteration of the changeling children, with a modern scientific twist.

It has to end.

Nothing occurring after 25 days of gestation can “cause” autism.
The underlying causes are strongly genetic, and contributed to by the in utero environment.
Anyone advocating, fighting for, adamantly screaming from the rooftops for some different explanation is definitely on the wrong side of history.
Not just wrong. A horrendous side of history.

The science is settled.
Vaccines don’t cause autism.