Today I want to discuss some of the ideas researchers have about the autistic spectrum. As you read this a LOT of money from a certain “charity” organisation claiming to speak for us is used to research a cure which the majority of grown up autistic people do NOT want. In fact many of us say acceptance of our quirks is all the cure we need. And mind you this doesn’t cost a single dollar, euro, pound, yen or whatever currency you want to not spend. But that is again a topic for another post.
Anyhow aside from this assortment of people claiming to do the best for us the holy grail in autism research is the root cause of it. The biggest question these day seems to be (aside from what is broken) if there is one root issue that causes autism (such as the broken theory of mind which I have already about) or if there are multiple causes. The biggest trick with the one cause hypothesis is always that finding only one among this diverse bunch who does not display the root cause already refutes the entire theory altogether. Unsurprisingly I can’t give you an answer to this question. I can only give you my gut feelings and some observations which might hinder current autism research.
To stop beating around the bush: my gut feeling is there is one unifying root cause for autism but I don’t know any better than you what it is (unless you think it’s vaccines). The only semi rational reasoning I can give is that there is a prevailing aspie language among us, that all of us seem to speak and understand without being taught. Of course aspie can be spoken in a variety of other languages but the way we communicate is always the same. I feel it’d be hard to reproduce that with different underlying causes.
We seem to have a culture that unites us and that all of us are drawn to. Similar preferences in how to interact with other humans to the point that accounts from other people seem to match our own story almost word by word. I have no theory of mind issues with fellow autistic people that are any more severe than theory of mind issues that I observe between neurotypical people. It is of course pure speculation to consider these overlapping traits as a sign of one underlying cause.
Now the more important issue for me: my observations on what might hinder autism research. A quick excursion to science theory: in general you observe things (data) and draw conclusions from it (hypothesis or theory). While your conclusions may very well be wrong the data should not be. (Or you might be Mr. Wakefield and have your faulty published studies withdrawn.) So while we can disagree with a conclusion, we can not dismiss the underlying data. I’m giving this introduction because I want to revisit the data of Mr. Bettelheim, who drew largely unpopular conclusions which are rightfully described as wrong and rather harmful. The unpopular conclusion which I am passionately siding against are of course the famous refrigerator mothers. Bettelheims idea is that mothers cause their childrens autism by acting aloof around them. I wonder if aloof fathers cause ADHD.
Bullshit. Obvious bullshit. Despicable that this really needs to be stated in first place. Even more despicable that this seriously was at one point the height of science when it comes to autism. So lets firmly cross the outrageous idea out but let’s go back to the data. Because as I said while we can all agree in an eerily harmonious way that the conclusion is idiotic we can not simply call the data idiotic.
Mr. Bettelheims observations concerned the comparison between behaviours seen in Jews in Nazi concentration camps and autistic children. (Yes I’m serious. No I’m not invoking a guy with a mustache to win a pointless internet argument.) He spotted various behavioural similarities between both groups. Now Mr. Bettelheim himself and his work <a href="http://www.leaderu.com/ftissues/ft9706/articles/finn.html" title="have been under scrutiny" ) for a long time. Maybe his data is manipulated like Mr. Wakefields to suit his own agenda? (Mr. Wakefield is the guy who has a patent on a vaccine and with the combination of three vaccines into one has lost an easy way to earn money. Hence he invented the idea that a specific substance in the three-vaccines-combined vaccine causes autism.) Let’s go even further back.
We can always reobserve his data independent of his personal conduct and interpretation. So he drew a link between severe trauma and autism. Now lets see what systematically traumatised people and autistic people have in common:
- self calming behaviour (spinning, rocking, humming)
- refusal of eye contact
- no interest to socially interact with people
- aversion to touch
- inappropriate responses to communication
- isolation from the peer group
- focus on small insignificant details
- obsession with seemingly obscure topics
- a tendency to sort and attempt to fix even meaningless details
- resistance to change
The only symptom of autism I can think of that is not shared with severely traumatised people is our language. If anyone can think of anything else that either of the two groups display but not the other: I’d be extremely happy to have it pointed out. Now where does this lead us? Certainly not to a cause. Trauma does not cause autism. But in my view autism causes trauma. We all agree autism pervasively affects multiple parts of personality. I’d go as far as to compare it to the effects of gender on my personality and I am by far not alone in this view. The difference between gender and autism is, while the two biological genders are almost 50:50 in distribution, the ratio between autistic and non autistic people is very far from even. Similar to the ratio between people identifying with the binary view of gender (there are two genders only, and I belong to the one of them that I display biologically ) to the people who either want to belong to the other of the two socially accepted biological genders or who refuse the idea of two genders or any other variation on the theme. Similarly our personal quirks are treated like a disease rather than a variety of life.
If an organisation came to exist made up of only one gender claiming to speak for the other gender (who if course is pathologised enough to not have a voice of their own) went around and spouted how the respective gender of the people is responsible for failing marriages, how much this gender costs the economy and how we need to cure female/male disease the people in this organisation would rightfully be subjected to heavy criticism, might even get to have a trip to their local psychiatrist or even get locked up. But if that organisation speaks “for” people on the autistic spectrum they make a very nice living out of fearmongering.
Why are autistic people so susceptible to trauma?
Well this issue has two sides to the coin. One I have already begun to discuss is how people treat autistic people because of their uniqueness. And the other which I will discuss later is a potential inherent increased vulnerabilty to trauma. Let’s take a deeper look at how we are treated because of our neurology: We are frequently misunderstood and submitted to verbal abuse, people populate our world claiming to understand us better than we understand ourselves. Our own experiences are dismissed and even disbelieved. This is a form of emotional abuse which is otherwise known as gaslighting. Of course no one considers the autistic perspective, after all we have no empathy, can’t speak and all we do is rocking back and forth in a corner, right? It doesn’t occur to anyone how treating us like a liability is hurtful to us. Yes to the point of being severely traumatised by it.
I will have you know: I am estranged from my family because I chose to express my personality over their insistence on me acting normal. I barely dare to go outside because this disapproval isn’t radiating of from my mother or father only, or even “only” my entire family but rather also teachers, therapists, class mates, flat mates, pretty much everyone I met when I was younger than 20 and vast and tremendous majority of people I met post hitting 20 as well. There has been a systematic push to make me deny who I am and act more normal. This is what trauma is made of. This is the story many many autistic people have to tell. This is what the famed ABA therapy is all about.
As I type this there are efforts going on to revoke federal blessing of institutionalised traumatisation of the entire autistic population. Revoke it! It has already been given. Because what we want, think and need has apparently absolutely no place in this world. I do realise not everyone treats autistic people that way and that gives me hope. This is the type of people we need. You are doing it right! We need more people like you who celebrate and utilise our differences rather than look down on it.
But even in an ideal world full of supportive people there might still be trauma running amok among the autistic population. I suspect we have an inherent, irreversible vulnerability to trauma. To understand this we need to take a look at the studies of a couple of neuroscientists who have studied the effects of a substance called VPA on rats. When injected in a rat embryo during a critical period, VPA leads to the born rats displaying autistic behaviours: not being very social, repetitive actions, you know the story. What’s more is that VPA is a drug used to treat seizures. Pregnant women who were treated with VPA have a sevenfold increased likelihood of subsequently giving birth to an autistic child. Now what does VPA do to the unsuspecting embryo that makes them display such behaviour? The Markams (our neuroscientist couple) looked for just that: VPA makes the rats more sensitive. That’s right: it is possible to produce autistic behaviour in rats by making them MORE sensitive. And that after decades of experts claiming we were hyposensitive.
Obviously the theory is not very popular. So the idea of the Markams is that the increased sensitivity leads the rats to live in what they call an intense world. They subsequently relabeled autism as the intense world syndrome. A tall order based on a few studies of rats. Funnily enough among the autistic community and even among parents the theory still is widely popular. It makes sense to many of us.
Now let’s assume for a moment this increased sensitivity might be one or the single root cause of autism (an even taller order). The logical conclusion is autistic people live in a world, that is too loud, too fast, too bright and too intense all over. Based on reports of autistic people this does not only cover sensory sensitivity but also emotional sensitivity. Trauma occurs whenever a critical threshold is crossed. When things are to intense. If everything is too intense for autistic people in first place this means the critical thresholds for trauma are lower in autistic people.
Meaning the dehumanising opinions we are exposed to do more damage than they do when you expose a neurotypical person to such verbal abuse (which is already extremely underrated). Each fluorescent light, each beeping technical equipment is a source of trauma for everyone on the autistic spectrum. The more severely we are autistic the more intense the pain. This does not only explain why we are consistently behaving as if severely traumatised it also gives clear guidelines on how to alleviate some of it.
To be crystal clear: in my opinion the increased sensitivity that I propose is inherent to autistic people. No one is to blame on the surface level if we are hurt quicker than others. This is how we are. That is how neurology works. No refrigerator mother made us this way. I’d also say the number of autistic people born from mothers who were treated with VPA during their pregnancy is significantly lower than 100%. We all got more sensitive somehow and now here we all are.
Actually I do not even care much how we came to be so sensitive. It has many good sides. Personally I soar to heights not graspable by my more sensory “deprived” peers through a simple walk in nature, through eating well made food. Simple things like that. What interests me is if this sensitivity might be modifyable temporarily. Such as you go to school, class is ok enough if it’s quiet but recess and on the playground outside school you get overwhelmed. Maybe something could help with the later without making the beloved walks in nature or dinner dull all of a sudden.
The real issue only arises if the people surrounding us and claiming to be beneficial to us refuse to accommodate reasonably for our increased sensitivity. In that case a toxic game begins where no one can win. The intense world theory gives clear outlines for how increasing the quality of an autistic live can be achieved by considering this unusual neurological make up. Hint: Bleach won’t help.
So again where does this lead us when it comes to researching autism? Maybe the biggest challenge for researchers these days needs to be to separate effects from trauma on our brains from genuine differences present because we are autistic. Maybe they need to compare neurotypicals to traumatised neurotypicals to autistics. It is entirely possible large parts of the data accumulated to understand us better is dilluted with ill effects we are suffering from BECAUSE we are autistic rather than modification by autism itself. The cause of autism can not be found if the cause and effects are confused.