Theory of Mind, Prosopagnosia, and Misophonia with self-help vs. publicly-funded help

  Theory of Mind was supported as a weakness among autistics in 2016.


 In the video Things not to say to an autistic person posted by BBC Three (which I have recently re-shared on social media), the panel of autistic people give their thoughts on this statement (ellipses denote going to another panel member’s thoughts/opinion):
“So we’re taught in school we’ve got five senses. Wrong – we’ve got six. The sixth one being our Theory of Mind, the ability to understand everybody else’s thought processes… You don’t have that instinctive understanding… and we rely on people’s body language and they lie with their body language, and that just makes me angry… So if you have the ability to do that, please don’t ever say you could be a little bit autistic, because it really is… Yeah, just don’t, just stop.”
I have managed to mask my lack of Theory of Mind quite well.  With hindsight, I think I ended up studying Psychology and Social Work because I wanted to understand how people thought and why people behaved the way they do.  Because I had the personality traits of a typical first-born in being a “people-pleaser” and learning from observing and trial-and-error, I learned a set of social skills to be able to appear to anticipate the needs of others based on what I thought I would need in the same situation.  In my email correspondence with Katherine Green after my first two appointments, she read the longest version of my questionnaire responses (because I sent the very long version, an abridged version and a mid-sized one restoring some of the more significant details I had taken out because I felt the abridged one was then too short) and noted that I wrote in everything that I thought was relevant, not really having awareness of what details were more important and which ones were not.  Even with this pointed out to me, looking back through what I sent, I still couldn’t unpick how I could have made it more relevant… This probably extends to my difficulties with job interviews because I know what I think is important, but I don’t know and can’t easily anticipate what it is that the interviewer is looking for in my responses.


   The blog post was also shared here.  Not to go off on too much of a tangent, but the writer of this post has had similar problems on job interviews and not being able to distinguish between important and unimportant details in social interactions (writing or speaking to people autistic or NT).


   The same Theory of Mind was hotly disputed in 2012 here and here.


 His most famous is the "Theory of Mind," based on the results from the now-famous "Sally-Anne" test. The Sally-Anne test, where 61 children (20 autistic, 14 Down's Syndrome and 27 neuro-typical) were shown two dolls, is an example of bad "science." Sally has a basket in front of her, while Anne has a box. The Sally doll, presumably made to move by an adult, which further complicates the test, puts a marble into her basket and leaves the room. While she is gone, Anne takes the marble from Sally's basket and places it in the box. When Sally returns, the child is asked, "Where will Sally look for the marble?" Only 20 percent of the autistic children were able to correctly answer the question -- Sally will look in her basket.

  From the test results Simon Baron-Cohen concluded "that the core problem in autism is the inability to think about other people or one's own thoughts" according to the blog, holah.co.uk. 

 Except that his test did not take into consideration the challenges many autistic children have in sequencing, language problems, misunderstandings of prepositions, the level of anxiety or stress levels of the autistic participants at the time of testing. Nor did it take into account literal thinking, something many autists have, all of which made the test and the questions asked that much more challenging.

My 10-year-old autistic daughter, Emma, when asked what her doll's name is, will reply, "Doll" or "Girl." This is just one example of Emma's literal mind at work. She is not wrong -- her doll is a doll and yes, the doll is a representation of a girl. If I say to Emma while she is in the shower, "Em, wash the soap off," she will take the bar of soap and hold it under the water, even though what I meant was she should wash the soap off her body -- she understood my request literally. Was she wrong? No. To draw some other conclusion from her answers would be. When the child, during the Sally-Anne test, was asked, "Where will Sally look for her marble?" a literal-minded thinker, who also has trouble with prepositions would have difficulty arriving at the "correct" answer.

Simon Baron-Cohen based his theory, which is taken by many as proven fact, on the assumption that the autistic participants understood the question. He then set about publicizing his theory, which inadvertently or not is used by many in the neuromajority to justify the abuse and mistreatment of the very people whom he categorizes as lacking empathy. Does anyone else see a problem here?

When Emma was diagnosed I came upon the "Theory of Mind"
[link dead by 2017]
http://www.icn.ucl.ac.uk/dev_group/ufrith/documents/Baron-Cohen,%20Leslie%20and%20Frith,%20Does%20the%20autistic%20child%20have%20a%20'Theory%20of%20Mind'%20copy.pdf


paper early in my research. At the time I thought this explained why, when any of us were upset, Emma seemed oblivious. But as I continued along the road of educating myself, coupled with observing my daughter, I began to question his theory. I read about autistics who avoided looking in people's eyes because it was too intense. One autist described it as akin to seeing into a person's soul. Others talked about how they could sense immediately upon entering a room the various occupants' emotional state and became so overwhelmed they would seek refuge in a corner, try to leave or would stim as a way to counter the intensity of what they were experiencing.

There are times when Emma will, with outstretched arm, put her hand out in front of her face like a shield. Often it is done when she's very happy and having a good time. I believe it is in response to the intensity of feelings, either hers or others or both. Or as Jessy Park,


Clara Claiborne Park's autistic daughter, was quoted as saying, "It's too good."
 


  The objection in 2012 was more of a process complaint involving small sample size that didn't represent the lived experience of the daughter of the author of the post.  The emma's hope book blogger (Ariane Zurcher) engaged in a dispute based on the comparative validity of knowledge of her lived experience and others who mutually validate (agree with) her and a controlled, albeit small sample size, Baron-Cohen study.  The dispute was rooted in a fear that Simon Baron-Cohen findings can be misunderstood and misunderstanding spread on viral social media to the detriment of more autistics than are helped.  Zurcher's dislike is perhaps more of the Sally-Anne test methodology to draw conclusions and unclear not concise writing style enabling misunderstandings.  The article ignores considerations NT people do unconsciously of how any action or statement can be misinterpreted by recipient and attempts to make communication ever clearer.  Zurcher is disagreeing with a particular concept in universal terms or 'go big or go home' type rhetoric.  
  
 Tragically, nuanced rhetoric is too hard to communicate in the short time people give to reading about a subject in a 'search term self-curated validate later' mostly individually-mediated online learning world with a constant need for 'rethinking what one thinks they know.'

  What doesn't apply to the lived experiences of Zurcher and her daughter as well as mutual validators (autistics who agree), starting with blog comments, may apply to others.  It's not a healthy autistic community if each person must seek mutual validation individually for how each person individually manifests autistic symptoms/traits.  If a symptom/trait doesn't apply to 1 autistic a person is free to simply say "not my issue could be for other autistics remember the saying 'when one meets 1 autistic one has met 1 autistic."  

  The diversity of how each person manifests common symptoms/traits complicates helping autistics improve their self-defined quality of life with public services funded by 'big guvmint' with 'evil/coercive' taxes or the (left) libertarian, fiscal conservative, market anarchist ideal: voluntary charity or, free, except in time spent building online relationships to find peer support/mutual validation from internet communities.


  Long term disputes of the validity of Theory of Mind impairments/issues harming inclusion of autistics in NT society between 2012 and 2016 both missed the point that some were able to learn, or were born with better Theory of Mind skills, and those for whom Theory of Mind problems were not an issue who only wanted to define their individual manifestation of autism by strengths not symptoms/traits perceived by NTs as weaknesses. 
  

  Theory of Mind issues are one of 3 crowd-sourced diagnostic categories of autistic skill deficits with misophonia and prosopagnosia being the other 2.  Online sharing of similar symptoms/traits/issues was done to create a private 'safety net' rather than strengthening the publicly-funded safety net, delegitimized with the slur 'welfare state,' that was based on a lie to start with.   From 5 minutes 8 seconds to 5 minutes 22 seconds of the linked video the 'welfare queen' mythology of ex-President Reagan, and subsequent Republican attempts, and successes, to cut the social safety net were based on, is specifically debunked.

  An example of an autistic woman with unusual sound sensitivity (misophonia) was reported here.  Copy and paste because original link died.   



http://www.yorkdispatch.com/breaking/ci_28875320/york-city-noise-elevates-womans-autism

This link may work as well for readers of this post as well as it did for the author (rustedaspie).



Regi Wise was too disempowered by noise sensitivity (misophonia) (and disconnected from 'autistic community' 'self-advocacy' that serves to replace the publicly-funded social safety net with peer to peer self-help rather than referrals)  to know about over the ear noise canceling (or not) headphones.  All that's needed is sound-deadening coating over the ears not necessarily headphones making another sound to drown out (cancel) background noise.  Some organizations run by and for autistics have borrowed 'flapping' of hands in the air from the deaf community (who cannot hear applause in the first place) to accommodate autistics with misophonia. 

http://www.yorkdispatch.com/story/news/2015/09/25/york-city-noise-elevates-womans-autism/73505280/

Friday, Sept. 25, 2015 - 9:09 a.m.
When York City resident Regi Wise hears a loud noise, she said at a city council meeting on Sept. 15, it hits her like a blow from a crowbar.

Noise has physical consequences for Wise: She said she has been hospitalized for what she calls "noise-induced trauma," which can cause her heart rate to rise to dangerous levels.

Wise, who declined to say what area of the city she lives in, has a form of autism that causes her to have a stronger response to sensory stimulation than neurotypical people as well as misophonia, a condition that makes her hypersensitive to sound.

She often has negative physical and emotional reactions to noise.

Her misophonia, which she said often exists in individuals with autism, has caused her to lead a circumscribed life.
 
"I can't hold a job because of sensory overload," she said.

Noise doesn't have to be loud to bother her, she said.

She can't find quiet in her home, in stores or in public parks.

She is affected by noise dozens of times each day and often has "meltdowns" while driving because of loud music from people's car stereos and other street noise, she said.

"I have been sitting at a stoplight and blacked out in my car because of loud music," she said.

"Sometimes all I can do is scream and scream and scream."

Wise is often forced to confront people who blast loud music from their homes or cars. But when she asks her neighbors and others to turn down their music, they lack empathy, often arguing with her, she said.

The stress of these confrontations adds to the exhaustion she feels as a result of her hypersensitivity to her surroundings, she said.

That overstimulation and exhaustion can lead to burnout, she said. "I'm at the tail-end of (a burnout) now," she said.

When burnout happens, Wise said, she has to teach herself how to do basic things, even how to eat.

A plea: Wise recently attended a city council meeting to ask the council to do something about noise pollution in the city.

She spoke on behalf of city residents with autism and sensory issues, citing the high rate of suicide for people with autism.

"What I would love," Wise said after the meeting, "is that if your music can be heard outside your vehicle or outside your house, you get a ticket."

There should be public spaces where people with sensory issues can go and know they can find quiet, she said.

No new laws would be necessary, city council president Carol Hill-Evans said after a meeting. The city could enforce noise ordinances already on the books.

The noise-control ordinance, Article 714 of the city's codified ordinances, forbids many kinds of noise disturbances, including blowing a car's horn or allowing tires to squeal unnecessarily, having excessively or continuously loud pets, using power tools at night, and yelling or playing music so as to cause a noise disturbance across property lines.

A first violation of the noise ordinance is punishable by a fine of $150-$1,000, a second violation by $300-$1,000 and a third by $500-$1,000.

Enforcement:Sgt. William Wentz, who has served as a nuisance abatement officer since 2005, said Wednesday that noise is one of the most common complaints among the 50,000 to 60,000 calls the department fields every year.

And officers do cite people for noise disturbances: at least one person gets a ticket each week, he said.

Wentz said he wished the department had the manpower to better enforce the noise ordinances, calling noise a "major problem" in the city. He said the department must prioritize calls, and safety takes precedence over issues like noise.

Enforcement of the noise-control ordinance is mostly complaint-driven, he said, but officers cite people for causing noise disturbances when they can — such as when a loud car drives by and nothing higher-priority, like a car crash or a shooting, is occurring.

In the 1990s, when Wentz was working the night shift, the city had a problem with young people cruising downtown listening to loud music, he said. Police dealt with it by creating a dedicated "cruising squad" of three officers who patrolled the circuit, along Market and Philadelphia Streets, where cruising took place.

In addition, a cruising ordinance was created to discourage the practice.

Most people who make noise complaints don't want charges filed, he said. They just want police to resolve the situation as quickly as possible.

If police issue a citation, the person who made the complaint, along with the officer who responded and the person who caused the disturbance, must appear before a judge.

"People don't want to have their neighbor arrested or cited," he said. "They just want us to go talk to them and tell them to turn it down."

What about Regi Wise, for whom noise is a safety issue?

"Her best course of action would be to contact community services," Wentz said.

Community services, he explained, is a department within the York City Police Department that helps people solve neighborhood problems before they result in tickets or arrests. Community services could mediate in a conversation between Wise and her neighbors, he said.

— Reach Julia Scheib at jscheib@yorkdispatch.com.

  Prosopagnosia (face-blindness or not recognizing peoples' faces) was described and awareness was spread at these links.  

 

  Prosopagnosia doesn't apply to my manifestation of autistic symptoms/traits while theory of mind issues do.  People who don't live with an issue or autistic symptom/trait should be more willing to want to tell others they communicate with about autism the saying 'other's issue not mine' if they can't pass for NT and need to disclose/'come out autistic.'