Are you autistic asks the channel 4 programme Are You Autistic?
The show only addresses its title by briefly discussing an online survey at the end (of both the show and this post). Instead, this reality documentary game show goes about showing there are huge swathes of people (by that we mean women) with a special kind of Autism that doesn't manifest itself in any of the key diagnostic descriptors and which goes undiagnosed due to long waiting lists, the wrong diagnostic techniques and poor public awareness.
Are You Autistic (channel 4)
One of our presenters, Georgia Harper, who oddly* has key observable behavioural descriptors of Autism (gait, stimming hand movements, unusual eye gaze, monotone vocal intonation) tells us:
"So now a group of scientists are wanting to help this lost generation using their cutting edge research into real world settings."
Yep, undiagnosed Auties are just like the generation of people who came back from the trenches, the generation perdue of Hemingway and Fitzgerald, bloodied by the carnage of new technological warfare.
I'm flippant but the "lost generation" trope came from Tania Marshall, a rather infamous writer of texts on Female Autism and the idea clearly shows how, weirdly, in Autism alone ( i.e. not in Alzheimers or other neurological 'conditions') concepts with no clinical basis come to be used as terms of a neurological syndrome as if they were facts or science or just have some evidential basis.**
What be this cutting edge research and who are these scientists? Liz Pellicano (psychologist), Francesca Happe (psychologist), Anna Remington (psychologist). I missed psychology becoming a science. Was it in the news?
The cutting edge research involves the two contestants who are presented as possibly autistic (there's nothing on how or why they were selected) carrying out a series of tasks, pressing buttons on a laptop when they hear the bark of a dog, filling out a phone order of sandwiches, watching some actors performing situations (Happe's 'strange stories' which are designed for child diagnosis) and reporting back what they thought about the actors' responses.
These responses by our two Generation Game contestants are, however, enlightening.
Strange Story example: Actress responds negatively to actor receiving an unpleasant image on his phone. Then she says, ooh let me have a look.
Happe asks our contestants "how should the actor reply?"
Jo answers that the actor should just say "No" to the actress request. "Because she's just said she was squeamish so for her to then to say I want a look, he should just say no."
JP answers "I would have asked why she changed her opinion of wanting to see the video. For me everything's so black and white, for somebody to be on the fence about watching a video it's weird to me."
JP is clearly uncomfortable with the notion of someone changing their mind like that. It's weird to him. Jo just offers an opinion of what the actor should do. One of these reactions conforms to expectations of what Happe is talking about here, Theory of Mind, the ability to understand others' motivations and intentions. One is clearly not.
Prof Liz Pellicano of UCL suggests: "Autism means different things to different people."
This reflects the common Autism trope "once you've met one person with Autism you've met one person with Autism," coined by Stephen Shore.
Of course, this has to be a reflection of personality, how Autism presents in the individual within the reference frame of their personality, it can't mean that everybody's Autism is different. That would make no sense for a syndrome to present differently in different people. The whole notion of a syndrome is that it's a cluster of symptoms recognizable over time.
"So you're either autistic or you're not?" asks the presenter, Anna Richardson.
"I think it's a combination of many traits, and many traits from birth," answers Pellicano quite clearly. She then confusingly adds:
"There are more ways in which we define Autism and so many more people are being included in that diagnostic category."
Isn't that somewhat odd that Autism might be defined in new and different ways? After all, psychology works by differentiating syndromes or mental illnesses from each other even though they share common threads; schizophrenia, anxiety, clinical depression, personality disorder, bi-polar, borderline personality disorder. That's generally how psychology works, imitating medicine. You find that patients come to you reporting similar symptoms, you carry out a study showing these symptoms appear to a group of people, the symptoms are different/differentiated from existing illnesses or syndromes. You don't, in psychology, find that a new group of depressives are also controlling their diet obsessively and add this new criteria to depression (precisely because most depressives don't do this), you discover a new syndrome, you name it anorexia. It shares many common descriptors with depression but isn't strictly depression. The same works in medicine. You don't widen colon cancer descriptors to include bowel cancer even though they're similar and in the same body area.
It's important to remember that Autism is diagnosed by psychologists and psychiatrists, it isn't diagnosed by medical doctors. So though Autism is almost certainly a neurological condition and not a psychological condition it is treated as if it were a psychological condition.
What would make Autism unique that it could adapt and change its own descriptors?
Francesca Happe clarifies: "Autistic people have a lot of trouble intuitively knowing what other people might be thinking."
The show is clearly meant to be non-clinical as this is usually referred to as Theory of Mind, the in/ability to understand motivations or thoughts of others and this is closely linked to difficulties with eye gaze.
It's important to clarify what eye gaze and eye contact are. Eye contact is when someone mirrors the gaze of another or initiates eye contact in order to read the motivations of others. A classic case of eye contact use is in sexual attraction. We use eye contact to initiate the whole I fancy you interplay then watch for mirroring in the other that reports back to us that they are indeed interested and you look for a hotel.
Eye gaze is our general use of our gaze to read other people's body language. We can also use eye gaze in reverse to communicate our feelings about others. For instance, "she gave me a dirty look" being a classic up and down gaze as if judging one's demeanour, clothes etc.
It's a complex system of communication that many believe makes up the vast majority of our interpersonal communication. Most importantly, it's unconscious. We don't think I must smile now to show I like her. That would mean a constant stream of conscious instructions to ourselves...
However, if you're autistic eye gaze, eye contact, are not unconscious actions.
In Asperger's study of "Autistic Psychopathy" his case studies, for example, with Fritz, Asperger's first case:
"Posture, eye gaze, voice and speech made it obvious at first glance that the boy's relations to the outside world were extremely limited. This was instantly apparent also in his behaviour with other children.
His eye gaze was strikingly odd. It was generally directed into the void. When somebody was talking to him he did not enter into the sort of eye contact which would normally be fundamental to conversation. He darted short 'peripheral' looks and glanced at both people and objects only fleetingly. It was 'as if he wasn't there'. The same impression could be gained of his voice, which was high and thin and sounded far away. The normal speech melody, the natural flow of speech, was missing. Most of the time, he spoke very slowly, dragging out certain words for an exceptionally long time. He also showed increased modulation so that his speech was often sing-song."
With Asperger's second case study, Harro:
"His typically lost gaze was often far away. Sometimes he appeared to be in deep thought, then he would draw together his brows and assume a strange, slightly funny dignity. His posture too was odd. He stood broadly, arms held away from the body, as a portly gentleman or a boxer might do. He had few facial expressions and gestures. His dignified seriousness was only rarely interrupted, for instance, when he secretly laughed to himself. It was usually impossible to make out what had struck him as funny at that moment.
His voice fitted this picture well. It was very deep and appeared to come from very far down, in the abdomen. He talked slowly and in a deadpan way without much modulation. He never looked at his interlocutor while talking. His gaze was far away. With a tense, even cramped, facial expression, he tried to formulate his thoughts.
He could look at himself as a detached critical observer ('I am dreadfully left-handed'). Although he was aloof from things and people — or perhaps because of this — he had rich experiences and his own independent interests. It was possible to talk to him as to an adult, and one could really learn from him."
Asperger's third, Ernst:
"Again, the eye gaze was highly characteristic, far away and unfocused. The eye did not seem to grasp anything and was vaguely aimed into the distance. Mainly for this reason the boy looked as if he had just 'fallen from the sky'. His voice too fitted in with this. It was high, slightly nasal and drawn out, roughly like a caricature of a degenerate aristocrat.
It was not only his voice but his speech too which conveyed the impression bordering on caricature. Ernst talked incessantly, regardless of the questions he was being asked. Everything he did was accompanied by elaborate explanations. He constantly justified why he did something in a particular way. He had to tell others at once whatever it was that captured his attention, whether or not the remark was relevant to the situation.
Some of these 'asides' were quite remarkable, not only in the sense that they were very adult in diction, but also because they showed good observation.
All his movements eloquently expressed his problem. His facial expressions were sparse and rigid. With this went a general stiffness and clumsiness."
Eye gaze, eye contact, physical awkwardness. Asperger also highlighted all the other 'symptoms' we associate with what was formerly called 'High Functioning Autism" or Asperger Syndrome. Aloofness, or as Leo Kanner described it in his influential 1946 paper on Autism as "autistic aloneness," both a need for separateness but also an inability to read body cues that made connection with others difficult. With this different eye gaze and 'aloneness' autistic children fail to learn the same social cues as Neurotypical (NT) children, for autistic children socialization (our encultured, learned set of behaviours that we learn from interacting and observing our peers) is problematic.
Thus social interaction is problematic for autistic children and adults on two levels, they don't read the social cues like NTs do and in turn their interaction with others is problematized by not having learned the social cues that lead to successful social interaction, a kind of double bind.
Anna Richardson asks Francesca Happe "Couldn't that just be shyness?"
Happe: "Shyness is when you're worried about how you're perceived by other people..."
Richardson: "Social anxiety."
Happe "Exactly. Whereas most people with Autism aren't thinking what other people are thinking and that's the cause of their difficulties."
So we come back to JO and JP, our two autistic Generation Game contestants:
Jo tells us she gets bored by smalltalk about the weather.
As Richardson suggests "So do I, Does that mean I'm autistic?" Obviously not.
Jo describes feelings in her piece, she's bored by smalltalk, interaction with her group of friends is difficult not because she doesn't understand cues or even see the point of sitting around with perhaps the most tedious group of women you could ever imagine in the world. But rather, she highlights tiredness, boredom, which are feelings often experienced by anyone in social situations. Her trepidation at the experience hints at a level of social anxiety which is later reinforced by her saying in the diagnostic process that she really struggled at college and left early. None of this suggests anything neurological, of course.
Our presenters suggest: "You can't be a little bit autistic so to get a diagnosis you need to present signs in all the areas."
So considering JP has unusual eye gaze, highlights he struggles with people telling lies, doesn't like it when things aren't black and white, all classic Autism descriptors, Happe then tells us: "I'm particularly interested in Jo."
Why? Why Jo and not JP who seems to actually exhibit descriptors of Autism? What has she seen that hasn't come up on (an admittedly edited) show?
"...as we know that women on the spectrum don't present in the way that men do. And the way of the stereotype in what we see in Autism so they often fly under the radar...there isn't enough research on women with Autism because we believe that there are four times as many males as females, probably there are many females that we haven't come to diagnose. We don't know why it is that many women seem to be able to camouflage their Autism, whether that's about the motivation to fit in, not as many men on the spectrum tell us they do that." my italics
This is pretty much the crux of why you're seeing an Autism diagnosis explosion. What you have here is the new orthodoxy (based on absolutely no evidence) that women are going undiagnosed. We don't know that women present differently. This is a classic confirmation bias. We want to believe that there are as many women as men who are autistic, we don't have any scientific basis for this assertion so we suggest a similar number of females are going undiagnosed. We broaden the descriptors to include women who would previously not be diagnosed because they don't fit the descriptors for Autism. Male autistics follow the classic Autism pattern of not trying to fit in because of the key descriptor of "autistic aloneness" but women don't exhibit this factor ergo they must have a special ability to "camouflage" in order to fit in. In fact the women tell us this and the men tell us they don't do this. Rather than coming to the logical conclusion that women who don't exhibit descriptors of Autism aren't autistic we want to confirm our bias so that this must mean that the descriptors are wrong and male-centric. The key to diagnosing women is that they have created these coping mechanisms to completely hide their autistic behaviours. We can't see these special unique only to (some, see below) women ability but we believe it when they tell us they can do it. In fact, they're so good at it, really weirdly, they themselves don't even realize they are autistic:
"Since getting my diagnosis when I was 28, I’ve made it my mission to help raise awareness of autism in women and girls. After all, if I couldn’t spot it in myself after nearly 10 years of working with autistic people, it would make sense that your general person wouldn’t be able to spot it in themselves. The stereotyped narratives we have around autism are still so strong, and the media often reinforces those." Emily Swiatek co-presenter on Are You Autistic?
Doesn't anyone else find this odd? You can reach 28 years old (in our current Autistic-aware culture) without someone, including yourself, noticing that you might just have a neurological disorder that severely affects social interaction, communication and imagination? In fact you work with autistic people but still don't recognize their behaviours in yourself? Even stranger, was she masking while unaware for her first 28 years that she was autistic? That makes no sense. Yet she masks now consciously that she's diagnosed?
Specifying interest in female diagnosis has lead to changes in diagnosis. Rather than sticking to the three core criteria of diagnosis: Difficulties in Social Interaction, Social Communication, social imagination, which used to be known as the Triad of Deficits, later Impairments, we've seen a perceptual shift. The DSM (the diagnostic manual still uses these concepts in their original form despite the diagnosis becoming Autistic Spectrum Disorder (ASD). So these include:
"Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.
Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat food every day).
Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement)."
In the UK the World Health Organization ICD-10 is still used for diagnosis and diagnosis is still for Asperger Syndrome unless there are learning disabilities present. (icd10 criteria for autism which is the reference point for diagnosis of Asperger's)
The DSM criteria has crucially added "Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life)."
And this is the perspective of Happe and most researchers now in the Autism field. The same descriptors (above) should be present but in women they may be "camouflaged" as Happe suggests.
Now this creates an obvious paradox in diagnosis. How do you diagnose something that doesn't appear to be present?
Further the new trope of a particular presentation of Autism in women (different to how it presents in males) suggests that "traditional" diagnosis has it all wrong because it's based on stereotypes of male Autism. This is certainly true of Simon Baron-Cohen's AQ screener test for Autism in the questions on mathematics or seeing repetitive patterns. It's also problematic in that it asks either/or questions which are fundamentally difficult for autistic people. Do I prefer museum or theatres? Well I like both in different ways might be a typical response.
However, the basic definitions of Autism should still apply for women as men. After all, what possible reason could cause Autism to be actually different in females rather than simply present differently? Thus, women should experience Autism in the same ways but their Autism could appear to others differently. Classically, in boys, Autism presents in violent outbursts and generally anti-social behaviour which tends to first alert parents or teachers that there is perhaps a difficulty.
Girls (and I'm talking children here) might not present their own frustrations in violent outbursts. However, once again, the same core 'deficits' should be in place, simply not as noticeable.
Happe suggests "there isn't enough research on women with Autism." Which is odd on two levels. One, that it's the hot topic in autistic research (Happe, Pellicano, Tony Attwood and Judith Gould, Meng-Chuan Lai, William Mandy, are among loads of high profile psychologists working in Autism research and diagnosis who focus on women). So why the supposed lack of research? The obvious answer is that how does one research Autism in women if women go undetected because they can camouflage their symptoms? It opens up the paradox at the heart of the 'masking trope.' How would one research something that doesn't appear to be there?
A further peculiarity is that some women don't seem to learn to mask their 'symptoms.' Why would some learn and others not? Why is it that those who supposedly learn to mask their 'symptoms' don't decide to 'let it all hang out' and give up the whole masking thing once they've been diagnosed? Why would you feel the need to continue to mask? You could simply say "I'm autistic and that's why I have to stim with my fingers and repeat the word lammerlammerlammer out loud"?
But no, oddly, those women who mask, continue to mask. Continue to pass as normal.
In Are You Autistic there area group of women who act out a kind of speed dating. Emily tells us:
"Social masking can be incredibly effective and to show this I'm going to do an experiment with some of my friends. We've got some guys along and we're going to speed date them. You're going to be able to see how we use social masking to make them feel comfortable, engage in conversation, and present ourselves as non-autistic women....We might make extra effort with out body language. Now obviously everybody does that from time to time but for autistic people it's the extra effort required to make those decisions to try and fit in and it doesn't come naturally in any way."
This would only make sense if you saw the women when they weren't masking. Which, funnily enough, we don't.
After their chat with some dishy boys the said boys are told the women are autistic. I love the posh youthful David Cameron if he was good looking one who talks to Carly Jones. His response "I'd disagree with you."
"The four women are autistic," says the presenter. "Oh really?" he looks awkward and is clearly thinking "what bollocks" but looks away and says "really? Is that true? Um...yeah that's shocking."
But what are these four women's symptoms then?
"When we leave there's a high chance that we'll want to sit in a dark room, not want to talk to anyone, have a meltdown."
Ah, Autism. Except that isn't is it? That has nothing to do with the descriptors. It's a new Autism that exhibits itself in social anxiety and getting very upset.
So we're creating a new Autism to fit around women who appear hyper-normal. Apart from the speed dating including Carly Jones, who's pretty in/famous in Autism circles we also have three girls sitting on a couch talking of their experience using "like" and speak with Australian inflection, classic modern socialized phenomena, how does one learn these if you fit the above autistic descriptors? It makes no sense. Especially as voice modulation is a key descriptor.
So, essentially, it seems, in order to catch autistic women who are going undiagnosed you ignore the key descriptors and redefine what Autism is. Happe tells us that she doesn't know why some women would camouflage their Autism but in a classic anti-science cart before horse moment she argues that it's probably to fit in, because the women they're diagnosing who mask do this but men don't try to fit in.
It's classic starting from a faulty hypothesis unscience. I diagnose a woman with Autism based on my knowledge that women mask, therefore she won't present descriptors as expected, she might not present any descriptors because she masks. How do you asses her then? Self reporting surely? So the woman exhibits no autistic behaviours but tells you you she struggles with social interaction, needs set routines, likes to do the same things over and over. Autism. So why do you mask? To fit in. Ergo, women mask their symptoms to fit in whereas men don't. You don't have any actual evidence for it, you're basing it all on the assumption that women mask therefore descriptors might not be present. It's just bizarre. Imagine if schizophrenia (for most of Autism's history the two were fairly inseparable) were diagnosed this way? A different female schizophrenia where women can mask their symptoms to appear "normal" in order to fit in. It makes no sense.
As to meltdowns, this is a popular trope that has become common currency. I've never seen the term used in clinical literature. Blame the internet.
"I think they're a lost generation," repeats Anna Richardson. And the utterly illogical statement: "One of the most shocking things is that there are a huge pool of undiagnosed people."
Huh? How can there be a huge pool of something that you don't know exists? That's the science level of not just this programme but the whole Autism masking trope.
* Why. Why. Why. Would some women not then mask? Why is it that Georgia Harper with her awkward hand gestures or unusual speech intonation not have learned to hide them? I'm asking the obvious question really, why is it that women who actually appear autistic have not learned to hide their Autism but women who don't appear autistic learn to hide their Autism to the point where they don't appear autistic at all? It really makes no sense. Well, unless you dare to suggest that many women are being diagnosed ASD that aren't actually ASD.
I hate to pick on Jo but when the section on sensory issues pops up, Jo says she has hyper sensitivity to light, "I pretty much wear sunglasses all year round. Even clouds if they're bright..." Which is weird as she's sitting in a studio with at least one key light that appears to be straight in front of her, we see her earlier driving to meet her friends and outside and in a cafe and no sunglasses. Later we get the shots of the two contestants' diagnosis at Cambridge on a beautiful cloudless day and Jo wanders in then steps out into the light to tell us about her diagnosis. Where are the sunglasses? Not disputing her claim but just that relying on self-reporting is problematic.
We finally get some hard science. An online questionnaire. Full on hard Newtonian science at last.
The online study had 750,000 completions tells us "Professor Simon" of this " in depth study." Obviously even Baron-Cohen differentiates this from actual research but suggests that the results correlate with the idea that loads of people go undiagnosed.
"Of everyone who took the test there were 87,000 people who scored above the cut off." That's a whopping 11.5% of those who chose to take the test (just to point out that you can't extrapolate self selecting tests to general population, only if the test was taken by a random sample of 750000 people) so, presumably people who thought they fitted the bill. I'm presuming as an internet test it wasn't restricted to British ISPs either. I know it's not science but they are kind of presenting it as such.
The worst pseudo science claim is "47,000 were women." So those with an uncritical bent might think, jeez, about 54% were women. Clearly showing loads of British women going undiagnosed! There's no breakdown of how many of the 750000 taking the test were women. So completely pointless except to tell you that 47000 women who completed the test showed varying levels of traits in an Autism screener. Useless as evidence of undiagnosed women if 90% of respondents were women.
As a point of reference I just took the AQ test and answered honestly and got 45 out of 50 (35 being the cut off) but I'm not autistic, like Jo I'm socially anxious, I'm a depressive, the questions fits those with personality disorders. The lost generation of personality disordered individuals.
You can check from the Twitter feed on the channel 4 test that accompanied the programme (test now sadly defunct but I assume as Baron-Cohen was involved it was essentially the AQ) to see the female/male ratio of interest, and from those you can identify as male or female (god I need to get out more):
Female 12
Male 3
Which reinforces my own confirmation bias that women would be far more likely to complete the test.
Tim Dowling in The Guardian is happy to regurgitate the assumptions in the show as if they were scientific fact:
"This was an ably presented look at autism. Not only did it seek to overturn preconceptions, but it showed that the condition is vastly more common than previously thought.
The question in the title hinted at the programme’s main proposition – backed up by the study – that autism is a vastly under-diagnosed condition. Until recently, it was thought the prevalence of autism was four times higher among men than women, but it now seems autistic women are just better at camouflaging it. And while the diagnosis of children has improved, it is likely that there is a “lost generation” of adults who don’t know they are autistic."
Ah science. This is how truthiness takes over from science. After all, Autism is supposedly a neurological genetic condition so bandying around such nonsense as if they were facts is utterly disingenuous.
Dowling repeats the mantras that become factoids:
"Particularly fascinating was the extent to which “social masking” may be behind the under-diagnosis of women with autism. Because women are better trained to fake sociability – laughing at jokes they don’t find funny, making an effort with eye contact, rehearsing social interaction ahead of time – the condition can be missed."
Better trained? Where does this training regime go on? Is there a faking neurotypicality training course. Women only. This is the grasp of Autism that the show promotes. That women who go undiagnosed are able to fake eye contact, laugh at crap jokes, rehearse social interaction. Who doesn't rehearse social interaction in situations you aren't used to? Oh ok, maybe that's just me as well then. It's not the laughing at bad jokes it's not understanding the complexities of concepts like irony. But then, that's hard to quantify as many NTs don't. But that's not Autism, that's good old fashioned idiocy. And eye contact. Ah, sigh. Dowling repeats the notion that eye contact is about looking someone else in the eye. If that were the case, what about that cow I just passed in the field giving me the old beautiful cow eye?
Eye contact is used to read to other's intentions, motivations, desires, wants, etc. Is that cow thinking, I wonder what that twat staring at me is thinking? What are his needs and desires? Does he fancy me?
For autistic individuals eye contact is nonsensical as a form of communication. It is if you never learn its use. It's unconscious. You can't replicate it consciously. You can look someone in the eye but if you don't know what you're supposed to be looking at (other than an eye in a socket in a face) how can you possibly read intentions in those eyes looking back at you?
The fact is that eye contact is part of a range of invisible skills we acquire if we're NT to use to read other's thoughts and intentions. Clinical literature on Autism highlights this "deficit." To repeat a key descriptor of the DSM:
"Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication."
As NTs we unconsciously mirror other's behaviours because we learn through socialization to mirror others. That is, for say eye contact, we learn to use eye contact by observing others using eye contact. No one tells us to learn eye contact. You can't replicate it consciously. You look at someone's eyes but you won't instinctively understand what you're looking for or indeed, why you're looking for it. It's as JP in Are You Autistic suggests, a black and white reasoning in Autistics. Why would someone say something with their mouth and say something else with their eyes? How can you even say something with your eyes?
Dowling: "In one, admittedly anecdotal, experiment a group of young autistic women went speed-dating with neurotypical men, none of whom noticed anything. Of course, this may have something to do with the average twentysomething neurotypical male’s ability to talk about himself endlessly."
Or that said women exhibit none of the DSM or ICD10 descriptors. None! What are the chances of hiding everything from someone on a one to one intimate basis? Apparently 100%.
"More poignant, was the revelation of the struggle this social masking involves. Several of the women said they would probably later have a meltdown in a darkened room as a result of the stress brought about by the experiment."
Yeah. That's what they said. Probably. And why would you choose to disbelieve someone?
" Only afterwards did we discover that JP was indeed autistic, and Jo was diagnosed with Asperger’s syndrome. "
How confusing, huh? What's the difference? Why was JP given a different diagnosis if he's clearly "high functioning" autistic? I was perplexed by this.
Dowling ends with:
"The programme’s online questionnaire – the largest study of its kind – found 87,000 people out of 750,000 participants reached or passed the diagnostic cutoff for autism. If nothing else, this is well above the accepted statistic that autism affects 1% of the UK population."
It's not a study it's an online questionnaire. For all we know one person could have completed the test 750000 times (for the literal minded, I'm not actually suggesting someone did).
And:
"Above all, Are You Autistic? was a plea for understanding. Actually, it was more than that: with its upfront, playful and sometimes spiky approach, it amounted to a persuasive insistence on understanding. Neurotypicals, wake up."
Actually, it seemd to be confirming the bias that women are going undiagnosed. All the autistic individuals on the show were women. The whole slant was that women are a "lost generation" and that we need to look at Autism differently, as something that doesn't actually present as any of the key descriptors in diagnosis, that we must broaden the concept of Autism to be inclusive of women who don't appear autistic in any way but tell of meltdowns and that they mask descriptors that they don't have (because they're male descriptors) and get exhausted by having to pretend to not be autistic in social situations where they mask something or other that aren't the key descriptors and they get home and have meltdowns, which seem to be a kind of elongated adult adolescent crying or anger tantrum. Autism. Are you autistic?
**Lost generation, masking, camouflage, meltdowns, female Autism, female Autism phenotype. That kind of thing. No evidence for any of it yet they're all common coinage in Autism circles through repetition. I hate to invoke Godwin's Law and The Big Lie*** but to paraphrase, if you repeat something often enough, it becomes the truth. If you continue to repeat it many times, people are bound to start believing it.
Meltdowns is in no clinical literature on Autism yet it's become incredibly common for people to use it as a 'symptom' and presentation factor of Autism. Masking was first coined by Tony Attwood, who got it from Liuane Holliday Willey's memoir of Pretending to be Normal. Attwood used the idea in his foreword to the book of the woman he had diagnosed who was able to mask her symptoms completely. Then Judith Gould at The National Autistic Society (NAS) starting using the term and presented a lecture on the subject MIssed Diagnosis or Misdiagnosis suggesting, as Attwood had, that girls present differently due to this masking strategy. The NAS began to use the term.
They quote Dale Yaull Smith:
"The fact that girls with undiagnosed autism are painstakingly copying some behaviour is not picked up and therefore any social and communication problems they may be having are also overlooked. This sort of mimicking and repressing their autistic behaviour is exhausting, perhaps resulting in the high statistics of women with mental health problems."
This quote became the common cornerstone of the argument. Pop it in google, you'll get loads of hits from council advice through science sites to blogs and beyond.
Who is Dale Yaull Smith? Good question. Pop her name in google and you'll be met with her quote. Is she a psychologist? A doctor? An Autism expert of some sort surely? Sadly not. The one link I could find, Sheffield Health News 2009, has her down as someone who was diagnosed with Asperger syndrome in her forties. Ah sciencyness.
Judith Gould's lecture was disseminated widely. It has no qualititive or quantitive data. In fact Gould openly admits that but that doesn't stop her making wild predictions:
"There is no hard evidence of numbers. Various studies, together with anecdotal evidence, have come up with male/female ratios ranging from 2:1 to 16:1 [the 2:1 is the anecdotal]. Whatever the true ratio, clinical referrals to a specialist diagnostic centre have seen a steady increase in the number of girls and women referred. Because of the male gender bias, girls are less likely to be identified with ASD, even when their symptoms are equally severe. Many girls are never referred for diagnosis and are missed from the statistics. Emphasis is placed on the different manifestations of behaviour in autism spectrum conditions as seen in girls and women compared with boys and men."
This is representative of both her lecture and of the wider discussion. There's no hard evidence but I shall now go on to assert facts that I've made up. Because I believe that women are going undiagnosed I'm going to suggest that there's a "true" hidden ratio as opposed to the factual evidence based one we have. I'm going to tell you there's a male gender bias though I have no evidence for this and can consequently absolutely certainly without any evidence tell you that females are less likely to be diagnosed ASD. And though they aren't diagnosed their symptoms are just as severe, no don't ask me how I know their symptoms are just as severe if they haven't been diagnosed and thus don't exist in any figures, just trust me on this one. Many women aren't diagnosed and so aren't in any figures. How do we know this, considering they aren't diagnosed so aren't considered autistic? Because uh...well we just do. Yeah, probably anecdotal. But we know Autism manifests differently in girls than it does in boys? How do we know? Um...well...we uh..you see, what we do is we diagnose girls who don't appear to have autistic behaviours and then these girls tell us that their behaviours manifest differently.
In brilliant circular logic Gould tells us:
"Girls are more able to follow social actions by delayed imitation because they observe other children and copy them, perhaps masking the symptoms of Asperger syndrome (Attwood 2007). Girls are often more aware of and feel a need to interact socially. They are involved in social play, but are often led by their peers rather than initiating social contact. Girls are more socially inclined..." autismhampshire: gender and autism
Now weird it be that Autism is characterized by difficulties in social interaction, imagination and communication because, in simple terms, without the use of eye contact, mirroring, Theory of Mind, autistic people do not unconsciously learn typical social cues (socialization). Now gender is not sex, gender is socialized. We're born female but become a woman through socialization (parents, peers, media, etc.). So how then, if being autistic is defined by missing out on social cues (socialization) unconsciously, could autistic individuals then consciously learn gendered roles (which are socialized) and pass themselves of as not autistic. Logically, if you miss social cues (socialization) unconsciously you won't actually know to follow it. Simply put, autistic people would be a-gender, non-gendered as gender is unconsciously socialized in us. Females don't biologically cry at rom-coms, love ponies or dresses, etc. How can you learn something consciously that you're unconsciously unaware of?
The masking trope has now become an official term in the DSM. Yet there's literally no studies or evidence for it. To repeat, how do you offer evidence of something that isn't there?
*** Attributed to Goebbels and Hitler. In psychology it's known as the "illusion of truth" effect where " people tend to rate items they've seen before as more likely to be true, regardless of whether they are true or not, and seemingly for the sole reason that they are more familiar." There's a decent article on Illusion of Truth at the BBC.
The show only addresses its title by briefly discussing an online survey at the end (of both the show and this post). Instead, this reality documentary game show goes about showing there are huge swathes of people (by that we mean women) with a special kind of Autism that doesn't manifest itself in any of the key diagnostic descriptors and which goes undiagnosed due to long waiting lists, the wrong diagnostic techniques and poor public awareness.
Are You Autistic (channel 4)
One of our presenters, Georgia Harper, who oddly* has key observable behavioural descriptors of Autism (gait, stimming hand movements, unusual eye gaze, monotone vocal intonation) tells us:
"So now a group of scientists are wanting to help this lost generation using their cutting edge research into real world settings."
Yep, undiagnosed Auties are just like the generation of people who came back from the trenches, the generation perdue of Hemingway and Fitzgerald, bloodied by the carnage of new technological warfare.
I'm flippant but the "lost generation" trope came from Tania Marshall, a rather infamous writer of texts on Female Autism and the idea clearly shows how, weirdly, in Autism alone ( i.e. not in Alzheimers or other neurological 'conditions') concepts with no clinical basis come to be used as terms of a neurological syndrome as if they were facts or science or just have some evidential basis.**
What be this cutting edge research and who are these scientists? Liz Pellicano (psychologist), Francesca Happe (psychologist), Anna Remington (psychologist). I missed psychology becoming a science. Was it in the news?
The cutting edge research involves the two contestants who are presented as possibly autistic (there's nothing on how or why they were selected) carrying out a series of tasks, pressing buttons on a laptop when they hear the bark of a dog, filling out a phone order of sandwiches, watching some actors performing situations (Happe's 'strange stories' which are designed for child diagnosis) and reporting back what they thought about the actors' responses.
JP and Jo, our erstwhile are they or aren't they autistic contestants
Strange Story example: Actress responds negatively to actor receiving an unpleasant image on his phone. Then she says, ooh let me have a look.
Happe asks our contestants "how should the actor reply?"
Jo answers that the actor should just say "No" to the actress request. "Because she's just said she was squeamish so for her to then to say I want a look, he should just say no."
JP answers "I would have asked why she changed her opinion of wanting to see the video. For me everything's so black and white, for somebody to be on the fence about watching a video it's weird to me."
JP is clearly uncomfortable with the notion of someone changing their mind like that. It's weird to him. Jo just offers an opinion of what the actor should do. One of these reactions conforms to expectations of what Happe is talking about here, Theory of Mind, the ability to understand others' motivations and intentions. One is clearly not.
Prof Liz Pellicano of UCL suggests: "Autism means different things to different people."
This reflects the common Autism trope "once you've met one person with Autism you've met one person with Autism," coined by Stephen Shore.
Presenter Anna Richardson with psychologist Liz Pellicano
"So you're either autistic or you're not?" asks the presenter, Anna Richardson.
"I think it's a combination of many traits, and many traits from birth," answers Pellicano quite clearly. She then confusingly adds:
"There are more ways in which we define Autism and so many more people are being included in that diagnostic category."
Isn't that somewhat odd that Autism might be defined in new and different ways? After all, psychology works by differentiating syndromes or mental illnesses from each other even though they share common threads; schizophrenia, anxiety, clinical depression, personality disorder, bi-polar, borderline personality disorder. That's generally how psychology works, imitating medicine. You find that patients come to you reporting similar symptoms, you carry out a study showing these symptoms appear to a group of people, the symptoms are different/differentiated from existing illnesses or syndromes. You don't, in psychology, find that a new group of depressives are also controlling their diet obsessively and add this new criteria to depression (precisely because most depressives don't do this), you discover a new syndrome, you name it anorexia. It shares many common descriptors with depression but isn't strictly depression. The same works in medicine. You don't widen colon cancer descriptors to include bowel cancer even though they're similar and in the same body area.
It's important to remember that Autism is diagnosed by psychologists and psychiatrists, it isn't diagnosed by medical doctors. So though Autism is almost certainly a neurological condition and not a psychological condition it is treated as if it were a psychological condition.
What would make Autism unique that it could adapt and change its own descriptors?
Francesca Happe clarifies: "Autistic people have a lot of trouble intuitively knowing what other people might be thinking."
The show is clearly meant to be non-clinical as this is usually referred to as Theory of Mind, the in/ability to understand motivations or thoughts of others and this is closely linked to difficulties with eye gaze.
It's important to clarify what eye gaze and eye contact are. Eye contact is when someone mirrors the gaze of another or initiates eye contact in order to read the motivations of others. A classic case of eye contact use is in sexual attraction. We use eye contact to initiate the whole I fancy you interplay then watch for mirroring in the other that reports back to us that they are indeed interested and you look for a hotel.
Eye gaze is our general use of our gaze to read other people's body language. We can also use eye gaze in reverse to communicate our feelings about others. For instance, "she gave me a dirty look" being a classic up and down gaze as if judging one's demeanour, clothes etc.
It's a complex system of communication that many believe makes up the vast majority of our interpersonal communication. Most importantly, it's unconscious. We don't think I must smile now to show I like her. That would mean a constant stream of conscious instructions to ourselves...
In Asperger's study of "Autistic Psychopathy" his case studies, for example, with Fritz, Asperger's first case:
"Posture, eye gaze, voice and speech made it obvious at first glance that the boy's relations to the outside world were extremely limited. This was instantly apparent also in his behaviour with other children.
His eye gaze was strikingly odd. It was generally directed into the void. When somebody was talking to him he did not enter into the sort of eye contact which would normally be fundamental to conversation. He darted short 'peripheral' looks and glanced at both people and objects only fleetingly. It was 'as if he wasn't there'. The same impression could be gained of his voice, which was high and thin and sounded far away. The normal speech melody, the natural flow of speech, was missing. Most of the time, he spoke very slowly, dragging out certain words for an exceptionally long time. He also showed increased modulation so that his speech was often sing-song."
With Asperger's second case study, Harro:
"His typically lost gaze was often far away. Sometimes he appeared to be in deep thought, then he would draw together his brows and assume a strange, slightly funny dignity. His posture too was odd. He stood broadly, arms held away from the body, as a portly gentleman or a boxer might do. He had few facial expressions and gestures. His dignified seriousness was only rarely interrupted, for instance, when he secretly laughed to himself. It was usually impossible to make out what had struck him as funny at that moment.
His voice fitted this picture well. It was very deep and appeared to come from very far down, in the abdomen. He talked slowly and in a deadpan way without much modulation. He never looked at his interlocutor while talking. His gaze was far away. With a tense, even cramped, facial expression, he tried to formulate his thoughts.
He could look at himself as a detached critical observer ('I am dreadfully left-handed'). Although he was aloof from things and people — or perhaps because of this — he had rich experiences and his own independent interests. It was possible to talk to him as to an adult, and one could really learn from him."
Asperger's third, Ernst:
"Again, the eye gaze was highly characteristic, far away and unfocused. The eye did not seem to grasp anything and was vaguely aimed into the distance. Mainly for this reason the boy looked as if he had just 'fallen from the sky'. His voice too fitted in with this. It was high, slightly nasal and drawn out, roughly like a caricature of a degenerate aristocrat.
It was not only his voice but his speech too which conveyed the impression bordering on caricature. Ernst talked incessantly, regardless of the questions he was being asked. Everything he did was accompanied by elaborate explanations. He constantly justified why he did something in a particular way. He had to tell others at once whatever it was that captured his attention, whether or not the remark was relevant to the situation.
Some of these 'asides' were quite remarkable, not only in the sense that they were very adult in diction, but also because they showed good observation.
All his movements eloquently expressed his problem. His facial expressions were sparse and rigid. With this went a general stiffness and clumsiness."
Eye gaze, eye contact, physical awkwardness. Asperger also highlighted all the other 'symptoms' we associate with what was formerly called 'High Functioning Autism" or Asperger Syndrome. Aloofness, or as Leo Kanner described it in his influential 1946 paper on Autism as "autistic aloneness," both a need for separateness but also an inability to read body cues that made connection with others difficult. With this different eye gaze and 'aloneness' autistic children fail to learn the same social cues as Neurotypical (NT) children, for autistic children socialization (our encultured, learned set of behaviours that we learn from interacting and observing our peers) is problematic.
Thus social interaction is problematic for autistic children and adults on two levels, they don't read the social cues like NTs do and in turn their interaction with others is problematized by not having learned the social cues that lead to successful social interaction, a kind of double bind.
Anna Richardson asks Francesca Happe "Couldn't that just be shyness?"
Happe: "Shyness is when you're worried about how you're perceived by other people..."
Richardson: "Social anxiety."
Happe "Exactly. Whereas most people with Autism aren't thinking what other people are thinking and that's the cause of their difficulties."
So we come back to JO and JP, our two autistic Generation Game contestants:
Jo tells us she gets bored by smalltalk about the weather.
As Richardson suggests "So do I, Does that mean I'm autistic?" Obviously not.
Jo describes feelings in her piece, she's bored by smalltalk, interaction with her group of friends is difficult not because she doesn't understand cues or even see the point of sitting around with perhaps the most tedious group of women you could ever imagine in the world. But rather, she highlights tiredness, boredom, which are feelings often experienced by anyone in social situations. Her trepidation at the experience hints at a level of social anxiety which is later reinforced by her saying in the diagnostic process that she really struggled at college and left early. None of this suggests anything neurological, of course.
Our presenters suggest: "You can't be a little bit autistic so to get a diagnosis you need to present signs in all the areas."
So considering JP has unusual eye gaze, highlights he struggles with people telling lies, doesn't like it when things aren't black and white, all classic Autism descriptors, Happe then tells us: "I'm particularly interested in Jo."
Why? Why Jo and not JP who seems to actually exhibit descriptors of Autism? What has she seen that hasn't come up on (an admittedly edited) show?
"...as we know that women on the spectrum don't present in the way that men do. And the way of the stereotype in what we see in Autism so they often fly under the radar...there isn't enough research on women with Autism because we believe that there are four times as many males as females, probably there are many females that we haven't come to diagnose. We don't know why it is that many women seem to be able to camouflage their Autism, whether that's about the motivation to fit in, not as many men on the spectrum tell us they do that." my italics
This is pretty much the crux of why you're seeing an Autism diagnosis explosion. What you have here is the new orthodoxy (based on absolutely no evidence) that women are going undiagnosed. We don't know that women present differently. This is a classic confirmation bias. We want to believe that there are as many women as men who are autistic, we don't have any scientific basis for this assertion so we suggest a similar number of females are going undiagnosed. We broaden the descriptors to include women who would previously not be diagnosed because they don't fit the descriptors for Autism. Male autistics follow the classic Autism pattern of not trying to fit in because of the key descriptor of "autistic aloneness" but women don't exhibit this factor ergo they must have a special ability to "camouflage" in order to fit in. In fact the women tell us this and the men tell us they don't do this. Rather than coming to the logical conclusion that women who don't exhibit descriptors of Autism aren't autistic we want to confirm our bias so that this must mean that the descriptors are wrong and male-centric. The key to diagnosing women is that they have created these coping mechanisms to completely hide their autistic behaviours. We can't see these special unique only to (some, see below) women ability but we believe it when they tell us they can do it. In fact, they're so good at it, really weirdly, they themselves don't even realize they are autistic:
"Since getting my diagnosis when I was 28, I’ve made it my mission to help raise awareness of autism in women and girls. After all, if I couldn’t spot it in myself after nearly 10 years of working with autistic people, it would make sense that your general person wouldn’t be able to spot it in themselves. The stereotyped narratives we have around autism are still so strong, and the media often reinforces those." Emily Swiatek co-presenter on Are You Autistic?
Doesn't anyone else find this odd? You can reach 28 years old (in our current Autistic-aware culture) without someone, including yourself, noticing that you might just have a neurological disorder that severely affects social interaction, communication and imagination? In fact you work with autistic people but still don't recognize their behaviours in yourself? Even stranger, was she masking while unaware for her first 28 years that she was autistic? That makes no sense. Yet she masks now consciously that she's diagnosed?
Specifying interest in female diagnosis has lead to changes in diagnosis. Rather than sticking to the three core criteria of diagnosis: Difficulties in Social Interaction, Social Communication, social imagination, which used to be known as the Triad of Deficits, later Impairments, we've seen a perceptual shift. The DSM (the diagnostic manual still uses these concepts in their original form despite the diagnosis becoming Autistic Spectrum Disorder (ASD). So these include:
"Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.
Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat food every day).
Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement)."
In the UK the World Health Organization ICD-10 is still used for diagnosis and diagnosis is still for Asperger Syndrome unless there are learning disabilities present. (icd10 criteria for autism which is the reference point for diagnosis of Asperger's)
The DSM criteria has crucially added "Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life)."
And this is the perspective of Happe and most researchers now in the Autism field. The same descriptors (above) should be present but in women they may be "camouflaged" as Happe suggests.
Now this creates an obvious paradox in diagnosis. How do you diagnose something that doesn't appear to be present?
Further the new trope of a particular presentation of Autism in women (different to how it presents in males) suggests that "traditional" diagnosis has it all wrong because it's based on stereotypes of male Autism. This is certainly true of Simon Baron-Cohen's AQ screener test for Autism in the questions on mathematics or seeing repetitive patterns. It's also problematic in that it asks either/or questions which are fundamentally difficult for autistic people. Do I prefer museum or theatres? Well I like both in different ways might be a typical response.
However, the basic definitions of Autism should still apply for women as men. After all, what possible reason could cause Autism to be actually different in females rather than simply present differently? Thus, women should experience Autism in the same ways but their Autism could appear to others differently. Classically, in boys, Autism presents in violent outbursts and generally anti-social behaviour which tends to first alert parents or teachers that there is perhaps a difficulty.
Girls (and I'm talking children here) might not present their own frustrations in violent outbursts. However, once again, the same core 'deficits' should be in place, simply not as noticeable.
Happe suggests "there isn't enough research on women with Autism." Which is odd on two levels. One, that it's the hot topic in autistic research (Happe, Pellicano, Tony Attwood and Judith Gould, Meng-Chuan Lai, William Mandy, are among loads of high profile psychologists working in Autism research and diagnosis who focus on women). So why the supposed lack of research? The obvious answer is that how does one research Autism in women if women go undetected because they can camouflage their symptoms? It opens up the paradox at the heart of the 'masking trope.' How would one research something that doesn't appear to be there?
A further peculiarity is that some women don't seem to learn to mask their 'symptoms.' Why would some learn and others not? Why is it that those who supposedly learn to mask their 'symptoms' don't decide to 'let it all hang out' and give up the whole masking thing once they've been diagnosed? Why would you feel the need to continue to mask? You could simply say "I'm autistic and that's why I have to stim with my fingers and repeat the word lammerlammerlammer out loud"?
But no, oddly, those women who mask, continue to mask. Continue to pass as normal.
In Are You Autistic there area group of women who act out a kind of speed dating. Emily tells us:
"Social masking can be incredibly effective and to show this I'm going to do an experiment with some of my friends. We've got some guys along and we're going to speed date them. You're going to be able to see how we use social masking to make them feel comfortable, engage in conversation, and present ourselves as non-autistic women....We might make extra effort with out body language. Now obviously everybody does that from time to time but for autistic people it's the extra effort required to make those decisions to try and fit in and it doesn't come naturally in any way."
This would only make sense if you saw the women when they weren't masking. Which, funnily enough, we don't.
After their chat with some dishy boys the said boys are told the women are autistic. I love the posh youthful David Cameron if he was good looking one who talks to Carly Jones. His response "I'd disagree with you."
"The four women are autistic," says the presenter. "Oh really?" he looks awkward and is clearly thinking "what bollocks" but looks away and says "really? Is that true? Um...yeah that's shocking."
Youthful good looking David Cameron: "Really? Is that true? Um...yeah, that's bollocks."
But what are these four women's symptoms then?
"When we leave there's a high chance that we'll want to sit in a dark room, not want to talk to anyone, have a meltdown."
Ah, Autism. Except that isn't is it? That has nothing to do with the descriptors. It's a new Autism that exhibits itself in social anxiety and getting very upset.
So we're creating a new Autism to fit around women who appear hyper-normal. Apart from the speed dating including Carly Jones, who's pretty in/famous in Autism circles we also have three girls sitting on a couch talking of their experience using "like" and speak with Australian inflection, classic modern socialized phenomena, how does one learn these if you fit the above autistic descriptors? It makes no sense. Especially as voice modulation is a key descriptor.
So, essentially, it seems, in order to catch autistic women who are going undiagnosed you ignore the key descriptors and redefine what Autism is. Happe tells us that she doesn't know why some women would camouflage their Autism but in a classic anti-science cart before horse moment she argues that it's probably to fit in, because the women they're diagnosing who mask do this but men don't try to fit in.
It's classic starting from a faulty hypothesis unscience. I diagnose a woman with Autism based on my knowledge that women mask, therefore she won't present descriptors as expected, she might not present any descriptors because she masks. How do you asses her then? Self reporting surely? So the woman exhibits no autistic behaviours but tells you you she struggles with social interaction, needs set routines, likes to do the same things over and over. Autism. So why do you mask? To fit in. Ergo, women mask their symptoms to fit in whereas men don't. You don't have any actual evidence for it, you're basing it all on the assumption that women mask therefore descriptors might not be present. It's just bizarre. Imagine if schizophrenia (for most of Autism's history the two were fairly inseparable) were diagnosed this way? A different female schizophrenia where women can mask their symptoms to appear "normal" in order to fit in. It makes no sense.
As to meltdowns, this is a popular trope that has become common currency. I've never seen the term used in clinical literature. Blame the internet.
"I think they're a lost generation," repeats Anna Richardson. And the utterly illogical statement: "One of the most shocking things is that there are a huge pool of undiagnosed people."
Huh? How can there be a huge pool of something that you don't know exists? That's the science level of not just this programme but the whole Autism masking trope.
* Why. Why. Why. Would some women not then mask? Why is it that Georgia Harper with her awkward hand gestures or unusual speech intonation not have learned to hide them? I'm asking the obvious question really, why is it that women who actually appear autistic have not learned to hide their Autism but women who don't appear autistic learn to hide their Autism to the point where they don't appear autistic at all? It really makes no sense. Well, unless you dare to suggest that many women are being diagnosed ASD that aren't actually ASD.
Simon Baron-Cohen (the one in the middle) with Sam Ahern and Georgia Harper
We finally get some hard science. An online questionnaire. Full on hard Newtonian science at last.
The online study had 750,000 completions tells us "Professor Simon" of this " in depth study." Obviously even Baron-Cohen differentiates this from actual research but suggests that the results correlate with the idea that loads of people go undiagnosed.
"Of everyone who took the test there were 87,000 people who scored above the cut off." That's a whopping 11.5% of those who chose to take the test (just to point out that you can't extrapolate self selecting tests to general population, only if the test was taken by a random sample of 750000 people) so, presumably people who thought they fitted the bill. I'm presuming as an internet test it wasn't restricted to British ISPs either. I know it's not science but they are kind of presenting it as such.
The worst pseudo science claim is "47,000 were women." So those with an uncritical bent might think, jeez, about 54% were women. Clearly showing loads of British women going undiagnosed! There's no breakdown of how many of the 750000 taking the test were women. So completely pointless except to tell you that 47000 women who completed the test showed varying levels of traits in an Autism screener. Useless as evidence of undiagnosed women if 90% of respondents were women.
As a point of reference I just took the AQ test and answered honestly and got 45 out of 50 (35 being the cut off) but I'm not autistic, like Jo I'm socially anxious, I'm a depressive, the questions fits those with personality disorders. The lost generation of personality disordered individuals.
You can check from the Twitter feed on the channel 4 test that accompanied the programme (test now sadly defunct but I assume as Baron-Cohen was involved it was essentially the AQ) to see the female/male ratio of interest, and from those you can identify as male or female (god I need to get out more):
Female 12
Male 3
Which reinforces my own confirmation bias that women would be far more likely to complete the test.
Tim Dowling in The Guardian is happy to regurgitate the assumptions in the show as if they were scientific fact:
"This was an ably presented look at autism. Not only did it seek to overturn preconceptions, but it showed that the condition is vastly more common than previously thought.
The question in the title hinted at the programme’s main proposition – backed up by the study – that autism is a vastly under-diagnosed condition. Until recently, it was thought the prevalence of autism was four times higher among men than women, but it now seems autistic women are just better at camouflaging it. And while the diagnosis of children has improved, it is likely that there is a “lost generation” of adults who don’t know they are autistic."
Ah science. This is how truthiness takes over from science. After all, Autism is supposedly a neurological genetic condition so bandying around such nonsense as if they were facts is utterly disingenuous.
Dowling repeats the mantras that become factoids:
"Particularly fascinating was the extent to which “social masking” may be behind the under-diagnosis of women with autism. Because women are better trained to fake sociability – laughing at jokes they don’t find funny, making an effort with eye contact, rehearsing social interaction ahead of time – the condition can be missed."
Better trained? Where does this training regime go on? Is there a faking neurotypicality training course. Women only. This is the grasp of Autism that the show promotes. That women who go undiagnosed are able to fake eye contact, laugh at crap jokes, rehearse social interaction. Who doesn't rehearse social interaction in situations you aren't used to? Oh ok, maybe that's just me as well then. It's not the laughing at bad jokes it's not understanding the complexities of concepts like irony. But then, that's hard to quantify as many NTs don't. But that's not Autism, that's good old fashioned idiocy. And eye contact. Ah, sigh. Dowling repeats the notion that eye contact is about looking someone else in the eye. If that were the case, what about that cow I just passed in the field giving me the old beautiful cow eye?
For autistic individuals eye contact is nonsensical as a form of communication. It is if you never learn its use. It's unconscious. You can't replicate it consciously. You can look someone in the eye but if you don't know what you're supposed to be looking at (other than an eye in a socket in a face) how can you possibly read intentions in those eyes looking back at you?
The fact is that eye contact is part of a range of invisible skills we acquire if we're NT to use to read other's thoughts and intentions. Clinical literature on Autism highlights this "deficit." To repeat a key descriptor of the DSM:
"Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication."
As NTs we unconsciously mirror other's behaviours because we learn through socialization to mirror others. That is, for say eye contact, we learn to use eye contact by observing others using eye contact. No one tells us to learn eye contact. You can't replicate it consciously. You look at someone's eyes but you won't instinctively understand what you're looking for or indeed, why you're looking for it. It's as JP in Are You Autistic suggests, a black and white reasoning in Autistics. Why would someone say something with their mouth and say something else with their eyes? How can you even say something with your eyes?
Dowling: "In one, admittedly anecdotal, experiment a group of young autistic women went speed-dating with neurotypical men, none of whom noticed anything. Of course, this may have something to do with the average twentysomething neurotypical male’s ability to talk about himself endlessly."
Or that said women exhibit none of the DSM or ICD10 descriptors. None! What are the chances of hiding everything from someone on a one to one intimate basis? Apparently 100%.
"More poignant, was the revelation of the struggle this social masking involves. Several of the women said they would probably later have a meltdown in a darkened room as a result of the stress brought about by the experiment."
Yeah. That's what they said. Probably. And why would you choose to disbelieve someone?
" Only afterwards did we discover that JP was indeed autistic, and Jo was diagnosed with Asperger’s syndrome. "
How confusing, huh? What's the difference? Why was JP given a different diagnosis if he's clearly "high functioning" autistic? I was perplexed by this.
Dowling ends with:
"The programme’s online questionnaire – the largest study of its kind – found 87,000 people out of 750,000 participants reached or passed the diagnostic cutoff for autism. If nothing else, this is well above the accepted statistic that autism affects 1% of the UK population."
It's not a study it's an online questionnaire. For all we know one person could have completed the test 750000 times (for the literal minded, I'm not actually suggesting someone did).
And:
"Above all, Are You Autistic? was a plea for understanding. Actually, it was more than that: with its upfront, playful and sometimes spiky approach, it amounted to a persuasive insistence on understanding. Neurotypicals, wake up."
Actually, it seemd to be confirming the bias that women are going undiagnosed. All the autistic individuals on the show were women. The whole slant was that women are a "lost generation" and that we need to look at Autism differently, as something that doesn't actually present as any of the key descriptors in diagnosis, that we must broaden the concept of Autism to be inclusive of women who don't appear autistic in any way but tell of meltdowns and that they mask descriptors that they don't have (because they're male descriptors) and get exhausted by having to pretend to not be autistic in social situations where they mask something or other that aren't the key descriptors and they get home and have meltdowns, which seem to be a kind of elongated adult adolescent crying or anger tantrum. Autism. Are you autistic?
**Lost generation, masking, camouflage, meltdowns, female Autism, female Autism phenotype. That kind of thing. No evidence for any of it yet they're all common coinage in Autism circles through repetition. I hate to invoke Godwin's Law and The Big Lie*** but to paraphrase, if you repeat something often enough, it becomes the truth. If you continue to repeat it many times, people are bound to start believing it.
Meltdowns is in no clinical literature on Autism yet it's become incredibly common for people to use it as a 'symptom' and presentation factor of Autism. Masking was first coined by Tony Attwood, who got it from Liuane Holliday Willey's memoir of Pretending to be Normal. Attwood used the idea in his foreword to the book of the woman he had diagnosed who was able to mask her symptoms completely. Then Judith Gould at The National Autistic Society (NAS) starting using the term and presented a lecture on the subject MIssed Diagnosis or Misdiagnosis suggesting, as Attwood had, that girls present differently due to this masking strategy. The NAS began to use the term.
They quote Dale Yaull Smith:
"The fact that girls with undiagnosed autism are painstakingly copying some behaviour is not picked up and therefore any social and communication problems they may be having are also overlooked. This sort of mimicking and repressing their autistic behaviour is exhausting, perhaps resulting in the high statistics of women with mental health problems."
This quote became the common cornerstone of the argument. Pop it in google, you'll get loads of hits from council advice through science sites to blogs and beyond.
Who is Dale Yaull Smith? Good question. Pop her name in google and you'll be met with her quote. Is she a psychologist? A doctor? An Autism expert of some sort surely? Sadly not. The one link I could find, Sheffield Health News 2009, has her down as someone who was diagnosed with Asperger syndrome in her forties. Ah sciencyness.
Judith Gould's lecture was disseminated widely. It has no qualititive or quantitive data. In fact Gould openly admits that but that doesn't stop her making wild predictions:
"There is no hard evidence of numbers. Various studies, together with anecdotal evidence, have come up with male/female ratios ranging from 2:1 to 16:1 [the 2:1 is the anecdotal]. Whatever the true ratio, clinical referrals to a specialist diagnostic centre have seen a steady increase in the number of girls and women referred. Because of the male gender bias, girls are less likely to be identified with ASD, even when their symptoms are equally severe. Many girls are never referred for diagnosis and are missed from the statistics. Emphasis is placed on the different manifestations of behaviour in autism spectrum conditions as seen in girls and women compared with boys and men."
This is representative of both her lecture and of the wider discussion. There's no hard evidence but I shall now go on to assert facts that I've made up. Because I believe that women are going undiagnosed I'm going to suggest that there's a "true" hidden ratio as opposed to the factual evidence based one we have. I'm going to tell you there's a male gender bias though I have no evidence for this and can consequently absolutely certainly without any evidence tell you that females are less likely to be diagnosed ASD. And though they aren't diagnosed their symptoms are just as severe, no don't ask me how I know their symptoms are just as severe if they haven't been diagnosed and thus don't exist in any figures, just trust me on this one. Many women aren't diagnosed and so aren't in any figures. How do we know this, considering they aren't diagnosed so aren't considered autistic? Because uh...well we just do. Yeah, probably anecdotal. But we know Autism manifests differently in girls than it does in boys? How do we know? Um...well...we uh..you see, what we do is we diagnose girls who don't appear to have autistic behaviours and then these girls tell us that their behaviours manifest differently.
In brilliant circular logic Gould tells us:
"Girls are more able to follow social actions by delayed imitation because they observe other children and copy them, perhaps masking the symptoms of Asperger syndrome (Attwood 2007). Girls are often more aware of and feel a need to interact socially. They are involved in social play, but are often led by their peers rather than initiating social contact. Girls are more socially inclined..." autismhampshire: gender and autism
Now weird it be that Autism is characterized by difficulties in social interaction, imagination and communication because, in simple terms, without the use of eye contact, mirroring, Theory of Mind, autistic people do not unconsciously learn typical social cues (socialization). Now gender is not sex, gender is socialized. We're born female but become a woman through socialization (parents, peers, media, etc.). So how then, if being autistic is defined by missing out on social cues (socialization) unconsciously, could autistic individuals then consciously learn gendered roles (which are socialized) and pass themselves of as not autistic. Logically, if you miss social cues (socialization) unconsciously you won't actually know to follow it. Simply put, autistic people would be a-gender, non-gendered as gender is unconsciously socialized in us. Females don't biologically cry at rom-coms, love ponies or dresses, etc. How can you learn something consciously that you're unconsciously unaware of?
The masking trope has now become an official term in the DSM. Yet there's literally no studies or evidence for it. To repeat, how do you offer evidence of something that isn't there?
*** Attributed to Goebbels and Hitler. In psychology it's known as the "illusion of truth" effect where " people tend to rate items they've seen before as more likely to be true, regardless of whether they are true or not, and seemingly for the sole reason that they are more familiar." There's a decent article on Illusion of Truth at the BBC.
Comments
Post a Comment