What is Neurodiversity? What is Autistic Dark Web? Where is Autism-Doctor standing on that matter?
Today, the autism community is splintered in many ways, many layers, many directions. One of the most important - and most fundamental - divisions is concerned with the perception of autism: both within the autistic community AND without.
There are two factions, with each faction containing a section of moderates and a section promoting extreme views: one takes a very positive (or, at the very least, neutral) view of autism. They emphasise their view that Autism is a difference - not a disorder, disease or dysfunction.
They insist that Autism is NOT a disability in its own right - yet demand to be afforded legal protections under disability discrimination law and call those who disagree with this confusing approach"ableists".
They defend this curious position by an unusual argument that, while ASC per se is not and cannot be disabling, they end up feeling, functioning and being treated AS IF they were disabled. Not due to the impact of Autism, but because Autism diagnosis makes the society view them through a different lense, from a different angle. It is this perception of Autism that makes the society impose limitations on the autistic people, consciously or not.
This group insists that social graces are "stupid and unnecessary", that we must be allowed to be themselves and should not have to "mask" and "camouflage" when around others.
They believe autism should and will be removed from psychiatric diagnostic manuals, comparing it to homosexuality (which was, indeed, miraculously transformed from a diagnosable psychiatric condition in to a mere symptom of "ego-dystonic homosexuality" in 1973 between DSM-II and DSM-III, until the idea of abnormality of homosexuality was rightly thrown out of the window entirely in DSM-III-R). By bringing up the homosexuality example, which is painfully, shamefully valid, they invoke a degree of legitimacy in this argument.
They believe you should be able to self-diagnose as autistic, at least while it is still a diagnosis. They argue that, ultimately, the term "autistic" should become an identity label, like the term "gay" has become.
Consequently, doctors - and anyone who reminds them there is any link between autism and medicine - are not particularly welcome. More on this, and other aspects of ND later.
The particularly fiery ones with the particularly extreme views on the subject became self-appointed judges (and executioners!) of anyone who dares to say anything other than songs of rapture and exaltation about autism in general, or - this is seen as an example of extreme immoral parenting, betrayal and lack of moral rectitude - your child's autism.
This group self-identifies as Neurodiversity movement - online they are defined by the hashtag #ND, #ActuallyAutistic, etc Those on extreme right of that group I identify as Neurodiversity extremists.
Anti-Neurodiversity - aka the Autistic Dark Web
The other group has declared that autism is nothing if not disability, that only clinically insane, painfully naive or not too bright people can assert autism is all rainbow and pink unicorns - this group does not appear to have a universal name on and offline. Their most active and most cohesive presence exists on Twitter. Online, they are loosely grouping themselves under the #ADW (Autistic Dark Web).
In this series of posts, I will be recording my stream of consciousness on Neurodiversity and Autistic Dark Web-type thinking. I will explain my arguments pro and against each one.
I will explain, too, why I choose to claim the middle ground, not following either of the two groups.
In this post, I would like to consider why it is extremely difficult to change minds of the most ardent supporters on Neurodiversity side.
A utism is an emotive condition; perhaps one of the most emotive conditions in my experience as a physician. Few other conditions evoke such powerful emotions and provoke such heated debates – with the exception of deafness, perhaps.
What are the reasons behind such power?
There’s a peculiar detail that is characteristic of autism (and, perhaps, deafness, again). People involved in working with autism usually have a personal link to the condition: the professional either is autistic themselves, or one(some) of their loved one(s) is(are) on the autism spectrum.
Of course, it’s common for HCPs to get inspiration to pursue a career in healthcare by an illness affecting their loved one. A common example is a son growing to be an oncologist because his mother had cancer at some point during his childhood. But even this phenomenon – whilst not rare – is not nearly as common as the link between personal link to autism and working as an autism professional.
In fact, I cannot name a single autism professional without such a connection. This link may be obvious or obscured; the professional themselves could be consciously aware of such link OR it might be resting in their unconscious.
Like Tony Attwood says, “It takes one to know one”. But, why?
Take Tony Attwood, for example. You know, of course, that Professor Attwood – Australian psychologist – is an internationally renowned expert on ASC. He became fascinated by autism 3-4 decades ago, recalling in an interview that he felt he had a certain affinity to NATs. But only recently, watching some family videos dating back to the time he was a young father of preschoolers – only recently, with his children in their 20s-30s – only recently did he realise that his own son is definitely on the spectrum, with classic signs and behaviours characteristic of Asperger’s syndrome.
No one actually said this out loud, but what does it mean for Tony himself, given that Autism “is among the most inheritable mental health conditions” (Rutter, 2012)?
Different bodies, different minds.
I believe, the reason is simple: our thinking (i.e., reasoning, learning, recalling, decision-making: all brain activity that makes us what we are) is FUNDAMENTALLY different. And that means that it is FUNDAMENTALLY IMPOSSIBLE to really understand each other fully.
With the best will in the world, an average NT cannot possibly appreciate the depth of the impact that ASC has on our lives. They are unable to grasp the cosmic multitude of impairments and talents that could be part & parcel of the condition.
It is impossible for them to even estimate the significance of profound differences in our basic physiology that are commonly disabling. For example, consider hyperacusis (heightened sensitivity to sounds) or vastly different patterns of brain activation during casual social tasks (e.g., small talk).
Without such understanding, it will naturally be challenging for NTs to empathise or even sympathise with NATs.
They may be able to understand our struggles on the intellectual level – if we provide them with such information. But the real understanding between us & NTs – the natural integrated understanding, when both parties “get” each other naturally, intuitively, on the cognitive, emotional and intuitive levels – that kind of understanding is very hard to achieve.
Now WHEN we are unfamiliar with it AND we can’t understand it, we come to fear it. It’s not complicated: we fear because we can’t say if it will attack us. We can’t even make a general prediction as to if it is dangerous in general. But we assume that it is & it will – because it’s safest that wa.
At that point in our minds we are in the fight or flight situation. Our choice is strictly binary – or so we tell ourselves – and depends on relative advantage. If there’s more of us, we choose to fight.
Meanwhile, we laugh at it. In psychology, humour is categorised as a mature defence mechanism. That is, we are defending our psyche – our soul/mind, our cohesive sense of self – from something that threatens that cohesion. In this case, it’s fear of the unfamiliar, unknown and unknowable.
Humour fulfills its defensive purpose by diminishing our perception of the threat. Put it simply, we cannot be fearful of something AND find it funny at the same time.
N.B. Please note: I am not saying that people fear autism or autistics. No, what they fear is the unfamiliar, the strange, the unknown, the alien that they autism & autistic people represent to them.
That same fear makes you avoid any engagements with autistic people, unless inescapable.
And that gives us the origins of the stigmatising behaviour: the avoidance & exclusion of the stigmatised group, the humiliation thru making fun of its members, the tendency to attack them.
But online, especially on social media, it’s still ok, apparently, to land the first verbal punch – even when your opponent is not overtly aggressive. In fact, many do happily land the first insult in an “intertribal” argument between followers of Neurodiversity movement and the adherents of the autistic dark web. (There are decent & interesting people on both sides – genuinely – so I am only talking about the extremists on both sides of the argument here.)
And few tribes are so ruthless, so obstinate, so cantankerous, so zealous in their proselytising as the ardent extremists of neurodiversity movement. (Please don’t think I am attacking #ND because in my heart I support the #ADW – I SUPPORT NEITHER; a post on #ADW is coming; I had to start somewhere).
Neurodiversity origins belong to the time when few people were even aware of the condition called autistic spectrum disorder (ASD). I’ve come to believe that such zeal was appropriate for that time, convinced by these descriptions of autistic people in the end of the 20th – beginning of the 21st century media (quoted from Silberman’s Neurodiversity book:
- autism diagnosis was a fate worse than death (p.431 of Kindle edition, 2016)
- “a terminal illness . . . a dead soul in a live body.” (ditto)
- “The first mention of Asperger’s syndrome in an English-language newspaper, in the Toronto Star in 1989, described “strange” and “clumsy” nerds who read books compulsively without understanding them, were incapable of friendship, and burst into tears and laughter for no reason “like stroke patients who have suffered brain damage.” The second mention, in the Sydney Morning Herald, led off with the sentence, “It is the plague of those unable to feel.” (p.432, Kindle edition, 2016).
I’ve come to believe that without the strength of their convictions, we would not have been able to have this debate today.
I realise it’s likely that I only qualify for my diagnosis now only thanks to the hard work of the ND movement back in those times.
I’ve learned that often you have to be shrill and loud to bring change about. Especially, for changing the centuries’ old status quo
I am truly grateful to Neurodiversity movement for what they have achieved.
Reflexive response to stigmatising treatment
Now, picture an autistic person who has been bullied so much that he has become first defensive, and then aggressive in response to any threat or perceived threat. It might appear insignificant to others, but he is raw. He can’t help it. This is his response now, and it is reflexive.
Naturally, evolutionary this response was the most adaptive – for milennia. We did not descend from people who had to stop & think to plan their response to every unexpected encounter.
Think about this, though: landing the first strike on anyone who you suddenly found standing in front of you with an angry expression – that was, too, an evolutionary adaptive response. Would anyone recommend this tactic in present day and age?
Here is the deal: once the status quo is shifted from the dead stop, you need to shift to a different set of strategies: those that call for cooperation, understanding, patience, collaboration. Strategies that encourage debate, while ensuring that it doesn’t degrade into a shouting match, hurling insults at each other.
Are true zealots capable of such shift?
Oftentimes, the answer is, “No”. That is not an indication of lack of intelligence. Far from that; to shift the status quo drastically, you must be a very intelligent person.
It’s not about intelligence at all.
Rather, it is about the “zealous personality”. You must have formidable beliefs in your ideals. You must be passionate about those. It is the passion that drives you forward. It is the passion that empowers you, validating your ideals. It is the passion that sustains you as you sacrifice everything for your convictions: your time, your money, your health, your loved ones and, eventually, your life.
The zealots are driven by ONE passion, which almost always dominates the rest. That passion feeds off the power engendered by a personally significant external event. (Alternatively, it can be generated by a series of regular & frequent events – each one is relatively minor, if considered in isolation from others. Yet, their cumulative effect is often greater than the effect of a single major event).
Whatever the cause, the outcome is always the same: behaviour that is shaped not by a balance of emotions, but one super-emotion, capable of subverting and sublimating all others.
The event required to generate emotional response that has BOTH requisite intensity AND longevity to become the zealots driving emotion is normally too traumatic to ever work it through the regular activist movement.
Because that is exactly what is happening: zealots, through their zealous activities, are working through trauma of their past.
And until the trauma is worked through, taken apart brick by brick, examined closely (brick by brick), identified accurately, and then carefully – brick by brick – destroyed in the safety of therapy; until that happens, that trauma will continue in the driving seat of your life. And you will be riding along, as a help, to open the gates & make sure theres nothing in the way for your single-minded driver.
You will go to places that YOU may not wish to, saying things YOU may not wish to. Because it’s not you making these decisions. It is the most powerful emotion of your life, born in the worst trauma of your life.
You may achieve success in the endeavours that you dedicate your life to. You may achieve fame – or, at least, notoriety. But deep down, it won’t feel like YOUR success, YOUR fame, YOUR actions. You will always feel slightly alienated from them. And you will be right, of course. They will belong to you, but the traumatized you. You as you don’t want to be.
So, why wouldn’t I try to convince anyone?
Ihad my trauma. I had my driver. That driver ruined much in my life. That driver us also responsible for much of the success I have had.
For me, identifying my driver was the head-spinning, neck-breaking, mind-boggling revelation. It cost me a few years of therapy. When I shared it, excited, with my husband, he was unimpressed. “I could have told you that free of charge”, he replied. But that’s the point – I needed to work it out for myself. People telling me would not have made a tiniest difference.
In the same vein, I realised that I can’t break through the resolve of ND zealots: they need to see their mistakes themselves. They need to understand. They need to stop fearing. To feel safe.
Because when we understand & we don’t fear, we allow ourselves to become sensitive to others & their feelings. We become receptive to others’ thoughts and ideas, willing to consider them and weigh them in our mind.
To paraphrase Irene Brown, vulnerability is the source of all power & creativity. And the ND extremists cannot allow themselves to be vulnerable, admitting that they may need to adjust and adapt. So, we can’t look to them for new & creative solutions.
So, I don’t argue with them anymore. If they genuinely want to ask a question or raise a point – and do so in a civilised way – I will respond, in the same respectful tone. I don’t block people for the sole reason they do not share my beliefs and convictions, & I follow thinkers on both sides of the divide. But I don’t take disagreements personally. And I leave the discussion when I see it’s becoming personal.
Also, I no longer consider myself to be a proponent of #Neurodiversity.