Reading the Research: Walking a Virtual Mile in Someone Else\’s Shoes

Welcome back to Reading the Research, where I trawl the Internet to find noteworthy research on autism and related subjects, then discuss it in brief with bits from my own life, research, and observations.

Today\’s article gives us a glimpse into the future.  There are a lot of potential uses for virtual reality.  These researchers have landed on the idea of making sexism a more real problem to people via putting them into a woman\’s body and having them experience typical sexist verbal abuse.  Because virtual reality reads as real to people, they experience the events more personally and powerfully.  The researchers think this would make a good rehabilitation tool for prisoners.  

While that\’s probably true, and a noble cause, why stop there?  Why not use it to teach people in the first place?  

There have been some attempts, via Google Glass, to teach autistic people parts of \”the hidden curriculum.\”  Things like reading emotions and body language, what things to say in a conversation, and when to say them.  But Google Glass never got very far, and the cost of the technology was too high for all but the richest of parents.  Most autistic people don\’t have access to those resources.  

If, as I suspect, virtual reality becomes more popular and accessible, it may eventually become possible for programs like this to teach all kinds of things.  The Stanford programs could be only the beginning.  You could gameify having a back-and-forth conversation, giving extra points for remembering relevant parts of a person\’s life so your questions and responses are more intelligent.  As face-reading technology improves, a wider database of facial expressions could be developed so autistic people could have enough information to recognize emotions easily, even when the person is a stranger.  

You could even use virtual reality to teach life skills in a safe environment, or even remotely.  One of the barriers for autistic people in learning these skills is not having any familiarity with the skill, and being afraid to fail.  You could walk through the process of cooking a basic meal, doing the laundry, or feeding the cat, without there being a mess afterwards if something spills.  

There are a lot of possibilities.  In this time of quarantine, when we don\’t know how long this will last, when a coronavirus vaccine will be available, and what life will be like afterwards… it gives me hope to know that this technology is on the horizon.  

(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn\’t get a whole Reading the Research article about them.)

Reading the Research: Walking a Virtual Mile in Someone Else’s Shoes

Welcome back to Reading the Research, where I trawl the Internet to find noteworthy research on autism and related subjects, then discuss it in brief with bits from my own life, research, and observations.

Today\’s article gives us a glimpse into the future.  There are a lot of potential uses for virtual reality.  These researchers have landed on the idea of making sexism a more real problem to people via putting them into a woman\’s body and having them experience typical sexist verbal abuse.  Because virtual reality reads as real to people, they experience the events more personally and powerfully.  The researchers think this would make a good rehabilitation tool for prisoners.  

While that\’s probably true, and a noble cause, why stop there?  Why not use it to teach people in the first place?  

There have been some attempts, via Google Glass, to teach autistic people parts of \”the hidden curriculum.\”  Things like reading emotions and body language, what things to say in a conversation, and when to say them.  But Google Glass never got very far, and the cost of the technology was too high for all but the richest of parents.  Most autistic people don\’t have access to those resources.  

If, as I suspect, virtual reality becomes more popular and accessible, it may eventually become possible for programs like this to teach all kinds of things.  The Stanford programs could be only the beginning.  You could gameify having a back-and-forth conversation, giving extra points for remembering relevant parts of a person\’s life so your questions and responses are more intelligent.  As face-reading technology improves, a wider database of facial expressions could be developed so autistic people could have enough information to recognize emotions easily, even when the person is a stranger.  

You could even use virtual reality to teach life skills in a safe environment, or even remotely.  One of the barriers for autistic people in learning these skills is not having any familiarity with the skill, and being afraid to fail.  You could walk through the process of cooking a basic meal, doing the laundry, or feeding the cat, without there being a mess afterwards if something spills.  

There are a lot of possibilities.  In this time of quarantine, when we don\’t know how long this will last, when a coronavirus vaccine will be available, and what life will be like afterwards… it gives me hope to know that this technology is on the horizon.  

(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn\’t get a whole Reading the Research article about them.)

Reading the Research: Kicking TMS into high gear

Welcome back to Reading the Research, where I trawl the Internet to find noteworthy research on autism and related subjects, then discuss it in brief with bits from my own life, research, and observations.

Today\’s article is what I\’ve been waiting to see since I realized how effective LENS was in treating my depression and anxiety, and since I read Switched On by John Elder Robison.  

Stanford has developed a form of TMS, or trans-cranial magnetic stimulation, which treats depression.  It does so in a relatively short amount of time, without medication or need to spend money over a lifetime.  And this version showed a 90% success rate, on subjects that no other form of therapy could help.  

I\’ve talked about the medication roulette, where people with depression spend copious amounts of money buying pills they\’ll need to take for weeks to find out if they\’ll help.  Often they don\’t, and then you need more pills, a different SSRI or other anti-depressant.  Repeat until your life implodes, the side effects wreck you, you run out of money, or you run out of options.  It\’s a very ugly, messy cycle.  

Neurofeedback and other forms of brain stimulation don\’t do that to you.  Some version of it can have you coming back week after week, but with others, like this one, you pay for a week\’s worth of sessions and the effects linger for years, or even a lifetime.  The up front cost might be expensive, but you save money, time, and suffering in the long run.  

This form of TMS will need a LOT more testing, on a larger range of subjects.  It will not likely keep the 90% success rate in larger populations.  Still, it\’s an incredibly promising start, and I\’m hopeful that technology like this will become the gold standard for treating depression.

(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn\’t get a whole Reading the Research article about them.)

Reading the Research: Autistic Friendships

Welcome back to Reading the Research, where I trawl the Internet to find noteworthy research on autism and related subjects, then discuss it in brief with bits from my own life, research, and observations.


Today\’s article does something I\’ve never seen a research article do before: it accepts autistic friendships as valid and seeks to describe them, rather than pathologize or try to \”improve\” them by demanding they adhere to neurotypical norms.

I\’ve never heard friendship described in quite the way this article does, with its talk about synchrony (or the sharing of emotions as well as experiences).  In thinking about my friendships, I\’d tend to agree in noting that as the falling down point.  It can be hard to get to know me or even read my face.  I feel like I do an adequate job of displaying my emotional state now, but the way I react to things and think about things can be so dizzyingly different than typical reactions that it serves as a significant barrier to syncing up emotionally.  

That said… I can confirm, while growing up, that my autism was less a barrier to making friends than the expectations put upon me by neurotypical people.  Making friends when I was little was hard because I was rarely given the chance to even try.  Because I didn\’t act or react they way they expected, my peers avoided me (except for bullies).  The environments of schools were never ever sensory-friendly.  It was about all I could manage simply to survive the stated purpose of school: the academics.  

On finding your tribe: at this point, I can safely say that at least two of the people I became friends with in high school later received autism diagnoses.  Judging by my recollection of behavior patterns, I would say at least two more of those friends probably qualified as well.  None of us, at the time, had those diagnoses as far as I know.  So I did, in a manner of speaking, find my tribe… but without that knowledge of common diagnostic ground, we merely gravitated to each other on shared interests and common tolerance for less usual behavior.  

I liked the experimental programs they listed here, and I hope more of them become available to autistic kids.  Theater in particular seems promising: as it says in the article, theater can literally teach some of the hidden curriculum that autistic people don\’t innately learn.  I somewhat regret never trying it when I was in school.  The closest I got was being stage crew for a single production, and I wasn\’t even very good at that.  

All in all, this was a promising article and I hope to see more thoughtfully written and fundamentally accepting pieces like it. 

(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn\’t get a whole Reading the Research article about them.)

Reading the Research: Misguided Genetics Research Goes On

Welcome back to Reading the Research, where I trawl the Internet to find noteworthy research on autism and related subjects, then discuss it in brief with bits from my own life, research, and observations.

Today\’s article is an example of one of those fun (sarcasm) hide-and-seek games scientists play with autistic genetics.  

Scientists, at Autism $peaks\’ direction, have been searching for a genetic cause for autism for decades now.  They have been entirely unsuccessful.  The fact is that autism is not a singular condition.  We are all different, right down to our genetics.  Because the issue can\’t be dropped (Autism $peaks might make less money and their climate of fear and their massive money stream might dry up), scientists are instead trying to find genetic subtypes of autism.  

(If you\’re not familiar with why most of the autistic population holds Autism $peaks in contempt, please consider this short handout with all the information you need to know.  If you were planning on donating this Autism Acceptance month, please consider ASAN or AWN instead.)

I have yet to see an overarching summary of these subtypes in the research streams I follow, though I heard a bit about it a couple years back at the governmental research review conference.  I want to say there were at least 8 different types theorized, which is a lot of subdivisions.  

The thing is, these subtypes were all directly focused on the clinical definition of autism.  Which is to say, they were only interested in deficiencies.  There was no care for what these genetic differences might mean for being better at certain jobs, or what positive personality traits might tend to go with them.  All that mattered, once again, was how autistic people didn\’t live up to some imaginary perfect neurotypical experience.  

Would it be useful to know the exact number of ways genetics can change to produce autistic people?  Probably.  Might it help us know what to expect in terms of gut issues, anti-depressants, and other quality-of-life concerns?  Probably.  

Y\’know what would be more useful?  Researching those treatments NOW, with even a fraction of the amount of money used to hunt these genetic differences.  Include autistic adults in designing these studies and in carrying them out.  Make those treatments and the information about them widely available to us and our families, so people suffering gut issues or mental illness or seizures can benefit NOW.

Happy Autism Acceptance Month.  

(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn\’t get a whole Reading the Research article about them.)

Reading the Research: Measuring Quality of Life

Welcome back to Reading the Research, where I trawl the Internet to find noteworthy research on autism and related subjects, then discuss it in brief with bits from my own life, research, and observations.

Today\’s article focuses on quantifying the quality of life for autistic people.  Essentially, the researchers wanted to know peoples\’ demographics (age, race, household income, etc), exact diagnoses, medications, activities and employment statuses, type of insurance if any, and various other kinds of info.  

You can look at the data yourself by going here and opening the two Word documents listed under \”Supporting Information.\”  Some of the results were sobering, like the fact that 71.8% of the surveyed autistic adults\’ households make less than $30,000 a year, and 65.9% of them had comorbid psychiatric diagnoses (depression, anxiety disorders, and other mental health issues except for seizure disorders).

I was pleased to see the researchers did apparently make a point to talk to autistic adults as well as parents of autistic children, both in designing their survey and when acquiring their data.  That\’s sadly abnormal in the history of autism research, but these folks, at least, took a step in the right direction. 

It seems the researchers did a decent job putting together the survey and data, but it somewhat surprises me, when reading the questions (also found at the second link above), that they seem so… basic.  Many of the questions are basic demographics.  There\’s some interest in IQ, sleep, religiosity, relationships status, and living situation, but in general the questions are quite simple.  They\’re multiple choice, Likert scale, or closed-ended questions, for the most part.  

I guess I\’d kind of hoped autism research would have gotten further along than this, by now.  I\’ve been alive for three decades, and the concept of Asperger\’s Syndrome/HFA/those of us who blend into the neurotypical population better has been known in the United States for more than two and a half decades.  That\’s a lot of time and money wasted looking for a nonexistent cure and a lot of time pointedly ignoring the needs of families and autistic individuals.  

Better late than never, I guess?  Hopefully this measure can be used widely to help autistic people and families develop healthier, happier, more meaningful lives.  Perhaps better, more in-depth measures can be developed as well.  

(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn\’t get a whole Reading the Research article about them.)

Reading the Research: Sociability and Giving Autistic People a Chance

Welcome back to Reading the Research, where I trawl the Internet to find noteworthy research on autism and related subjects, then discuss it in brief with bits from my own life, research, and observations.

Today\’s article is lengthy, but includes multiple studies about autistic sociability.  

For years, autism has been defined as an individualistic deficiency.  Which is to say, the typical narrative is: \”That child/adult is autistic, and therefore they have difficulties like problems reading social cues and abnormal eye contact.\”  The focus is on the autistic person, and specifically, that person\’s weaknesses.

No mention is made of our strengths, nor is there a care for our interests, our enthusiasm, and the focus that allows us to become experts at our chosen fields.  Nothing about what makes valuable as people.  The medical model is only interested in deficits and weaknesses.

The research shows that not only are we more than our weaknesses, it also overthrows the medical model\’s stereotype of autistic people.  We are sociable, like typically developing humans.  We have empathy.  

Below the headline, there\’s a quote from a team of researchers: \”Style, not substance, drives negative impressions of the social life of people on the autism spectrum.\”  This is from a study cited in the article.  

It appears the communication issues that people experience when an autistic-neurotypical interaction occurs are more an issue of presentation.  We don\’t appear as appealing or personable of a social partner as a neurotypical person would appear to be.  However, the content of those interactions, how fulfilling and pleasant the conversations were, was rated equally with autistic people as it was typically developing people.  

Essentially, the stigmas people hold about autistic people are far more damaging to our social lives than the actual inexperience with reading social cues or physical communication difficulties.

(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn\’t get a whole Reading the Research article about them.)

Reading the Research: Virtually Social

Welcome back to Reading the Research, where I trawl the Internet to find noteworthy research on autism and related subjects, then discuss it in brief with bits from my own life, research, and observations.

Today\’s article is ostensibly about the coronavirus and how to handle the social distancing involved with preventing its spread, but honestly… it applies more broadly to any situation where people are isolated, especially autistic peoples\’ general lives.  

Autistic people are more likely to be isolated because we\’re different, and some neurotypical people and systems simply don\’t accept that.  We therefore find our communities online, and tend to have very few in person relationships.  For some people, that\’s enough.  For others, it isn\’t.  

This article has some suggestions for healthy online social activity.  In some cases, they\’re cringy: eating dinner over video chat with someone you met over a dating app seems like a recipe for disaster, frankly.  As if the sounds of chewing weren\’t bad enough in person, now you could hear them amplified over a video call, with the clink of silverware and glasses!

Some of them aren\’t bad, though.  Sending a one-minute kindness, like a genuine compliment or expression of gratitude, tends to make both the sender and the receiver happier.  Expressing gratitude, especially regularly, has been linked repeatedly to better mental health.  

I think many autistic people already have down the idea of networking with interest groups.  We can really get into our hobbies and interests, and being part of groups who are also interested in those things can be really fulfilling. There are various communities around autism itself, including several Reddit boards and other organizations.  

I looked into the Tools they linked.  TableTopics and The And seems like products you pay money for.  They\’re sets of questions on durable paper, which you can reference at the table to start conversations.  The cost isn\’t great for people without a lot of income to begin with.  Still, they\’re options, I guess.  

Ikaria, Cocoon, Monaru, and Squad look like they\’re trying to be Facebook killers.  Which, Facebook needs to die, so that\’s fine with me.  Of the four, only Squad seems to be publicly available, and it looks like it markets to you the same way Facebook does.  I\’ll hold out for one of the other three, maybe.

(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn\’t get a whole Reading the Research article about them.)

Reading the Research: Tracking Down Sensory Sensitivities

Welcome back to Reading the Research, where I trawl the Internet to find noteworthy research on autism and related subjects, then discuss it in brief with bits from my own life, research, and observations.

Today\’s article is a highly technical look into a theory of sensory hypersensitivity.  Sensory differences are commonly found in autistic people, especially hyper (over) sensitivity, where the person experiences sensations like noise, touch, or smell much more strongly than others.  

The obvious example is how I can hear basically every noise in the house even though almost all of them are irrelevant.  Really, my house creaks sometimes when there are temperature differentials.  This is not useful information, and I shouldn\’t need to consciously remember that.  Also other people sometimes have conversations that don\’t include me, which is perfectly normal, and I neither want nor need to hear them.  

This explanation (and excuse for me to gripe) aside, it appears a team at Massachusetts IT is closing in on why my brain does hypersensitivity thing to me.  The key is a protein named Shank3, which supports your brain\’s internal communication.  

I was surprised to see the Shank3 name again, since usually it\’s brought up in the context of specially designed mice who entirely lack the protein to test this or that medical intervention.  The idea is that these designer mice can stand in for human subjects, since you can do really risky things to mice in the name of science, but not to humans.  These Shank3 knockout mice display symptoms somewhat similar to \”autistic symptoms,\” ie: avoidance of social interaction and repetitive behaviors.  

They used these designer mice and tested whether they would react to very small amounts of input to their whiskers: stimulation so minimal that unmodified mice wouldn\’t detect it.  The designer mice did detect it, which suggested strongly that these mice also have hypersensitivity.  With that established, the team looked at their neurology and found that parts of the brain are hyperactive.  

Interestingly, they did a second round with a different designer breed of mice.  This version had the proper genetics to produce Shank3, and proper levels of that protein, BUT they designed it so they could turn off a single part of the brain\’s ability to use the Shank3 protein.  That part of the brain, naturally, was the sensory bits.  The results were identical: same hypersensitivity and hyperactivity in the brain.  

The hope with all this is to figure out how to counter this hypersensitivity for people who are tortured by it, especially in a more targeted manner.  The article points out that sedatives exist, but they\’re not really ideal for day-to-day use since they affect the whole brain.

Personally, I\’d like the ability to just take something and have my brain stop informing me of every errant noise.  It can be really horrifying, draining, and frustrating, especially in a busier place like the mall or a fitness facility or a school.

As a last, somewhat amusing-to-me note: this research suggests strongly that the designer breed of mouse, the Shank3 knockout mouse, is not in fact simulating an autistic human, but a human with hypersensitivities.  I can\’t begin to tell you how much research that throws into question.  While it\’s true that many autistic people suffer hypersensitive senses, many have hyposensitivities (undersensitivities, compared to hypersensitivity\’s oversensitivity) or a mix of both.  Or neither.

Sometimes, that\’s science for you.  Mistakes are made, and they\’re not found for years.  Science is self-correcting, so future research can be built on this new understanding and better, more accurate, more useful results obtained.  Hopefully sooner rather than later.

(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn\’t get a whole Reading the Research article about them.)

Reading the Research: Brain Connectivity

Welcome back to Reading the Research, where I trawl the Internet to find noteworthy research on autism and related subjects, then discuss it in brief with bits from my own life, research, and observations.

Today\’s article is a refinement in the \”autism is a neurological condition\” theory.  There is, of course, much debate about what exactly autism is.  Various people will contend it\’s a medical problem, a neurological difference, or in some special cases, \”doesn\’t exist at all.\”  While much of this is semantics and depends on how many symptoms you decide are \”autism,\” the fact remains that there is a neurological component to whether someone\’s autistic or not.  

Our past understanding of neurological disorders is that a specific part of the brain might be damaged or malfunctioning.  There are some really interesting cases of people with severed corpora collosa (singular: corpus collosum) being able to simultaneously draw two entirely different things, one with each hand.  The corpus collosum is the part of the brain that connects the left and right halves.  It\’s sometimes surgically cut to preserve a patient\’s life, such as when they suffer repeated, massive seizures.  

There\’s also the story of Phineas Gage, the man who survived a railroad spike flying through his skull but suffered major personality changes as a result of all that brain damage.  The part of the brain most affected was the prefrontal cortex, which is thought to contain our personality and some memory capabilities.  Interestingly, it appears the personality changes may have been temporary.  Presumably the wonders of neuroplasticity kicked in and his brain rewired itself as best it could.  He lived another 12 years and apparently returned to at least some kind of normal life.

Instead of pointing to a specific part of the brain and saying, \”there, that\’s what makes you autistic!\” it appears that it\’s more a question of which parts are connected how well.  This is a step forward from Dr. Grandin\’s discussion of the specific parts of her brain that are larger or smaller in her book The Autistic Brain.  While individual differences absolutely exist, if the brain isn\’t well-connected to a specific part, it won\’t perform that part\’s functions as well as a neurotypical person\’s brain would.

I laughed a bit when I read, \”Dr. Astle said that one implication of their work is that it suggests that interventions should be less reliant on diagnostic labels.\”  Unless you\’re an insurance company or new/haven\’t been paying attention to this sort of thing, this is staggeringly obvious.  To quote Dr. Stephen Shore for the umpteenth time, \”If you\’ve met one person with autism, you\’ve met one person with autism.\”  Autism is a trashbin diagnosis, and it spans a lot of different people with a lot of different needs, symptoms, and personalities.  Trying to insist on a treatment for a patient without regard for their actual symptoms is stupid.

At any rate, I was pleased to see this study, and hope further research will develop from their findings.  

(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn\’t get a whole Reading the Research article about them.)