Reading the Research: Applying Big Data to Autistic Genetics

Posted on by Realistic Autistic

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 glimpse of a possible future for autism diagnostic codes and our understanding of the spectrum.

Autism is what scientists call a heterogeneous condition.  Which is to say, there isn\’t just one cause, and there isn\’t just one treatment.  Symptoms vary incredibly widely, and so do the genetics involved.  As often as not, the experiences of any given group of autistic people will have commonalities, but their specific symptoms might only have the smallest amount of overlap.  

A great deal of money and time have been poured into finding out what causes autism over the last 40 years or so.  The results have not been conclusive.  Everything from air pollution, reduced gut diversity, and the genetic history of humanity itself contributes, it seems.  There\’s evidence that autism has produced human specialists over thousands of years, and those specialists have been valued enough to pass their genetics on throughout the generations.  

It was hoped, with the advent of the human genome project, that we might finally understand how autism is coded for.  That hope proved futile… at least until now.  

Machine learning and Big Data may eventually provide these answers, assuming both can be harnessed.  This study is a very small example of the idea.  Basically, you get enough relevant data points (thousands of autistic people\’s genetics), and then you use a powerful computer find categories for you from those data points.  

The researchers in this study did exactly that, but for one very small subset of autism. If this was done on a grander scale, it\’s likely we could have actual categories of autism, rather than simply sorting ourselves based on symptoms.  

In all honesty, I have mixed feelings about this.  Part of the reason the autism community is a community is because we have a lot in common, including the diagnosis code.  Splitting the spectrum into dozens of microcategories seems like it might intrude on that unity and de-legitimize autistic experiences.  

However, these microcategories might also allow for more targeted treatments for specific issues.  The category these researchers found suffers from cholesterol issues.  Having that knowledge lets you know what to test for, and what to be careful of overall.  In short, having these categories may allow us to more easily and quickly reduce autistic suffering due to related medical conditions.   

(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: GI Misery

Posted on by Realistic Autistic

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 discusses the effects of gastointestinal symptoms on children.  The more GI issues (trouble swallowing, constipation, diarrhea, bloating), the more likely the child will have sleep issues, self-harm tendencies, focus issues, and higher rates of aggression and restricted/repetitive behaviors.  Can we all guess why?  Good, good.

This is one of those studies that you kind of have to shout \”well DUH\” at.  It\’s good to have the connection between GI distress and \”challenging behavior\” validated empirically, but I don\’t think it\’s quantum physics/brain surgery/rocket science to say, \”if human A is suffering lots of misery on a regular basis, their whole life will be affected negatively.\”  

The study does at least note that autistic children are 2.7 times more likely to suffer these issues than typically developing children, and that half the tested autistic children had frequent GI issues.  That\’s a lot, particularly since the sample size was over 250 autistic children.  

The study also rightfully notes that GI symptoms are very treatable, and the results can truly be life-changing.  Now, keep in mind the best treatments for these issues can be expensive.  We\’re talking a fecal transplant from a good quality donor.  This is one of those things insurance should cover, but generally refuses to because their business is taking as much money as possible and spending as little as possible in return. 

The last thing to note here is that the study was specifically on little kids.  So here\’s the song and dance one more time: Hey y\’all, KIDS GROW UP.  If these problems aren\’t caught and treated young, they can and absolutely will persist into adulthood.  Then instead of angry preschoolers, you have angry adult humans, some of whom can\’t vocalize their suffering in a way that is easily recognized as \”I need help with my GI tract.\”  So you get holes punched in walls, and \”challenging behavior\” as caregivers often term it.  

This is one of those things you want to rule out in cases like that, because sometimes it literally is as simple as \”ease the suffering, \’challenging behavior\’ ceases.\”  For further reading on this subject (and aggressive autistic people in general), please consult this excellent post.

(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: Text Message Therapy

Posted on by Realistic Autistic

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 starts off with kind of a shocking statistic: 19% of all adults in the USA have a diagnosable mental illness.  That\’s basically 1 in 5 adults.  That\’s several people in your family.  Count off people in the grocery store.  Every time you get to five, know that one of those people suffers from depression.  Or anxiety.  Or a personality disorder, or some other condition classified as mental illness.  

That\’s absolutely awful.  

As simple as it would be to blame the coronavirus for Messing Everything Up, it\’s unfortunately not that simple.  The fact is, people in the US mostly don\’t get preventative care.  Our medical system is set up to treat symptoms and bankrupt us in the process.  Our food is created to be addictive, nutrient-deficient, and laced with sugar.  We overall don\’t get enough movement to be anything close to healthy, and we don\’t spend much, if any, time outside in nature.  

The end result is a profoundly unhealthy population.  The obvious consequence: staggeringly high rates of mental illness.  

While I\’m pleased to see this idea of therapy-via-text message seems to work, I\’m a little dubious as to how high quality it can really be.  It\’s one thing to generally teach people about mental illness, self-care, and support techniques, and quite another to put together a file on a client and be able to offer targeted, specific advice and strategies the way a typical therapist would.  

Something is better than nothing when it comes to mental illness, and having someone outside your circle that you can trust to ask about things is extremely valuable.  But I will note that similar systems have been tested using chatbots, with some success.  This might, I suppose, be a better educated and human-centric version of that.  

Mostly, though, I\’m just frustrated these sorts of things aren\’t taught in school.  It would go a long way toward a healthier country if people knew what mental illness looks like and how to help with it.  After all, almost everyone experiences major depression at least once in their lifetime.

(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: Improving Likability Measures

Posted on by Realistic Autistic

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 somewhat of a relief.  It seems that, when asked, people tend to appreciate the autistic people in their lives.  That\’s a kindness to know, because I and other autistic people I know have often felt burdensome.  

This is particularly highlighted when you look into how these poll questions have been asked in the past.  Some these questions involve reminding the askee of how much money and time and effort it can take to support an autistic person.  Which naturally is neither our fault, nor terribly kind.  

Saying \”Autism is the costliest health condition in the UK, moreso than cancer, stroke, and heart disease combined, now how do you feel about autistic people?\” is like saying, \”cats are a lot of money and effort to take care of, and in the end you\’re not really guaranteed a loving, loveable pet, now do you think people should have cats?\”  Or perhaps more to the point, \”Children cost, on average, about $13,000 a year, they will try your every nerve regularly as long as they live with you, perhaps even after, and make decisions you don\’t approve of on a regular basis.  They may or may not even take care of you when you\’re old. Now how do you feel about people having kids?\”

My point is that phrasing in polls has a lot of falling down points.  They actually teach you a significant amount about this if you go for a degree in psychology, because you need to know how to write good questions instead of crap ones like these when setting up an experiment or conducting other forms of research.  Replacing a clearly biased and unkind survey with a simple thermometer scale seems like a very small, but probably valuable step to humanizing autistic people (and getting more valid data on how people actually feel about us).

Notably, by the way, if you used this thermometer scale in the US, but instead asked about how people felt about autism rather than autistic people, I\’d bet dollars to doughnuts that the response would be much much more negative.  With Autism Speaks basically demonizing the condition as loudly as their millions of dollars allow (which is pretty loud), it ends up being kind of a \”love the sinner, hate the sin\” thing.  Except autistic people didn\’t choose to be born the way we are, nor should it be stigmatized to be autistic.  

A shiny new survey that isn\’t inherently problematic is a very small step, in my opinion, but perhaps an important one.  I can only hope that\’s true.  Public opinion does indeed play into policy change, but even more than that… autistic people have to live on this planet, among everyone else.  The less people shun and hate us for existing, the easier that existence is.  

(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: Probiotics and Your Brain

Posted on by Realistic Autistic

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 underlines how the gut affects the whole body, and why taking care of it can help support a healthy mind as well as body.  One wouldn\’t typically think of the intestinal tract as an important key in how well the brain functions, but as we\’ve found out recently, the intestinal area contain neurons (enteric nervous system) that are linked to your brain via the spinal cord.  If your gut is unhappy or out of balance, often your brain will be as well.

This study is a research review, which means the authors trawled research databases for studies done by others around a certain topic.  In this case, they were looking for studies about probiotics, prebiotics, depression, and anxiety.  The idea in lining up all this research is to find out, in a broader sense, what the research shows about the effects of probiotics and prebiotics on depression and anxiety.  

Perhaps unsurprisingly, most of the good bacteria strains studied helped people manage their depression better.  I say \”perhaps unsurprisingly\” because I also take probiotics (bought from a medical source, not off the store shelves), and it helps me.  

If anyone is wondering or wants to try probiotics that definitely do something (and are on the list of things they mention in this article as working), the probiotics I use are these: Theralac and TruBifido.  They\’re comparatively expensive, but on the other hand, you\’re basically shredding up your money and stuffing it down the drain when you buy probiotic products from a grocery store.  Also, I only need to take one of each a week and that\’s sufficient, so the bottles last more than half a year.  

Notably, repairing one\’s gut is not like taking a painkiller.  It\’s a process that can take weeks, so patience is required and the changes may be gradual.  Still, I found it worthwhile, as it\’s reduced the severity of my dysthymia and anxiety.  

(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: Personality By Writing Style

Posted on by Realistic Autistic
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 had a surprisingly positive take on autistic electronic communication, which I thought was interesting.

I\’ve never given a whole lot of thought to my emails, but the trends described here about autistic email styles seem to hold about true for me.  In my emails, as in my life, I tend to get directly to the point.  

Social niceties are fine, but I typically only ask about such things if A) I remember, B) there\’s a good reason to ask (such as something being amiss previously), and C) I care.  C is true more often than not, but email communication is often with people I don\’t know well enough about to have anything to actually ask about (B).  

I\’ve also noticed the preference for precision in writing.  When I write emails, I try to include all pertinent information so I can be sure I\’ll be understood.  Perhaps this extra care has something to do with how frequently autistic people are misunderstood?  Because then neurotypical folks wouldn\’t be as inclined to be careful.

I received an email recently asking me to complete a task for someone, but they didn\’t actually give me all the information I needed to do the task, so it sat for a bit before I finally just gave it my best shot and asked for further information.  The situation turned out okay (and honestly, didn\’t matter that much), but it was one of those communications that could have been handled in seconds and then forgotten entirely if communication styles had matched.  

I gotta say, I personally prefer the \”autistic email communication style\” as laid out here.  If I have to get email, I\’d rather it contain all needed details, be polite, and get right to the point.  I guess most neurotypical people prefer the emphasis on niceties? 

(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: Life Rituals and Stimming

Posted on by Realistic Autistic
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 puts a \”normal life\” into much-needed context.  Rituals, it turns out, ease the effects of stress in humans.  Sounds familiar, right?  Autistic people chewing on things, or rocking, or using echolalia?

Actually, that\’s not what the researcher is talking about.  He\’s talking about going to church, watching football, and having weddings and funerals.  Those are rituals.  Coming home every day from work, feeding the dog, and flopping on the couch to read the news before starting anything else… that is also a ritual.  Sitting around the dinner table together to eat dinner every day is another ritual.  And of course, saying a prayer over a meal is a ritual.

These familiar behavioral patterns make us comfortable and put us at ease.  But they\’re so routine and commonplace that people don\’t typically recognize them as rituals.

But perhaps they should, because if they did, autistic people might not seem so odd after all.  Our rituals and stimming behaviors may be more obvious, but they serve exactly the same purpose: to help us cope with anxiety.  Our lives are full of stress, but according to the article, even neurotypical people become more rigid and repetitive in their behavior when put under stress.

This is not to mention socially appropriate stimming, like cracking your knuckles, bouncing your leg, twiddling your thumbs, fidgeting with your phone, scrolling down Facebook endlessly, and humming.

So basically, autistic people are human… just moreso.  Our behavior is everyone\’s behavior, just amped up.

(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: Enforced Poverty

Posted on by Realistic Autistic
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 report issued from Drexel University on the financial status of autistic people.  Or, I should say, the lack of financial stability of most autistic people.

The poverty rate for autistic people is much, much higher than average.  So is the under-employment rate, and the unemployment rate.  There\’s reasons for this.  

First, retaining the services of a therapist or team of care professionals (especially good ones) is incredibly expensive.  There can be a lot of complicated medical issues that come with autism, including epilepsy, sleep issues, a barrage of allergies, and special dietary needs.  Then there\’s services for behavioral and developmental support: Speech-Language Pathologist, school support services, therapist, and home support staff.  

And naturally, sometimes the school refuses to provide what you need, and you also need to retain the services of a lawyer.  

All of this adds up, and atop that mountain of expenses is the typical living expenses: a home, utilities, and food.  How is someone supposed to afford all that?  

Mostly, they can\’t.  Unless your paycheck is in excess of $100k (so, almost no one), that mountain of expenses is impossible to handle on your own.  But the services are still needed.  

So the vast majority of families turn to social security programs.  Medicaid, in particular.  If the need can be demonstrated, the state will arrange (or let you arrange, depending on the specifics of the program) for support services, free of charge.  Sounds great, right?  

There\’s a catch.  Not only is it incredibly hard to get the state to recognize you have legitimate needs, but also Medicaid programs tend to have a limit to household income.  Above that limit, and you do not qualify for services.  

That would seem fine, if the limit was $100k.  But it\’s not.  Instead, it\’s typically around the poverty line or below.  Working class and middle class families are out of luck.  

Say you\’re a family with a middle class income, maybe $60k.  The support services you need will run you tens of thousands of dollars into debt every year, so you can\’t afford to pay.  So then what?  You still need the services.  

The answer that many families have opted for is, \”You quit your middle class job and get something that barely pays your bills, but puts you under the Medicaid limit.\”  

The adult autistic version of this is, \”Well, I might be able to climb the ladder in this company I\’m working at or get training to get a better paying job, but if I do that I\’ll lose my SSI and support services, so I can\’t.\”  That\’s of course assuming they managed to acquire a job with advancement prospects in the first place, which is statistically unlikely.  

Usually autistic people (myself included) simply aren\’t able to get or keep a job of that level.  We might be qualified, even exceptional, for the position, but when office politics comes calling we sink rather than swim, and are quickly let go for not fitting in or understanding.  Here\’s a poem about this.

It\’s a bad situation, and it only gets worse as costs continue to rise, while Medicaid income limits remain the same.  
(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: Peering into the How of Sensory Sensitivities

Posted on by Realistic Autistic
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 some insight into what causes sensory sensitivities.  Unsurprisingly if you\’re familiar with how I define autism, the cause is found in the brain.  

Typically when I speak about sensory sensitivities, I\’m not talking about visual ones.  This is because I mostly don\’t suffer from them.  However, there is actually a wide variety of these sensitivities.  I wrote about them in depth a couple years ago.

As a quick refresher (and for folks that really don\’t have time to read the linked article), there are at least five forms of visual hypersensitivity:

  1. Light sensitivity, which can cause pain when looking at or near LEDs, sunlight reflected off snow, fluorescent lights, camera flashes, and glare from basically any bright light source.
  2. Contrast sensitivity, which can make black letters on a white page blur together.  Needless to say, this causes great difficulty when reading.
  3. \”Tunnel reading,\” which is difficulty reading groups of words or groups of letters together.  It can be hard to move from line to line on a page, which naturally also makes reading a headache.
  4. Impaired print resolution, where the letters on a page or computer screen are unstable, shimmer, or move.  There are a lot of ways to make reading misery, aren\’t there?
  5. Environmental distortions, which is similar to impaired print resolution, except not limited to print.  The whole world, including stairs, faces, furniture, and even flooring can shimmer, vibrate, shift, or warp in your vision.  
This study sought to discover what causes these conditions, and found that autistic brains don\’t moderate themselves very well.  The visual input basically comes in at full force, and rather than tone it down to make it usable, the brain just… gets buried in it.  We can also be more distractible in terms of the motion of large objects.  Finally, they suspect autistic visual areas-of-focus may be smaller than neurotypical ones, meaning some of us may have a sort of \”tunnel vision\” effect.
It seems this team is likely to try to flesh out their findings, so we may get more specific answers as to what\’s going on with visual sensitivities.  Hopefully, with this understood, treatments could be created for people who suffer from these symptoms at a high level.  
Someone like me, who sometimes suffers light sensitivity but is mostly unaffected, wouldn\’t need such a thing.  But a person whose whole world is constantly warping, shifting, and shimmering could hardly focus on school, making friends, and pursing their interests.  
Much of scientific progress is incremental, but I have hope, someday, for less suffering for everyone.  

(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: Development and Limitations

Posted on by Realistic Autistic
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 part of why it\’s never wise (and often cruel) to put children into boxes like \”low functioning autism.\”

It\’s always an odd feeling to read obvious information being merely speculated at, or worse, puzzled over, in scientific research.  This study done by the University of California showed changes in the \”autism severity\” as children aged from age 3 to age 6.  Some improved, to the point of not even qualifying for an autism diagnosis anymore.  Some struggled even harder as they aged.  More than half stayed about the same.

The tone of the research seems politely puzzled about this fact.  It isn\’t complicated.  The fact is, as children age, their brains develop.  Autistic people don\’t always develop at the same pace as our neurotypical counterparts.  So the demands and skills required for, say, preschool or kindergarten might not have developed in us by the time we\’re old enough to be placed there.  Which leads to concerns and diagnoses and extra help.  

Given time, some children\’s brains develop and begin to catch up with the demands placed on them.  Others may fall further behind, as the demands increase but their brains aren\’t given sufficient support and time to develop.  This information is neither brain surgery nor rocket science.  It\’s merely observation and firsthand/secondhand knowledge from other autistic people and parents.  

I do think it\’s foolish to assume that just because a person no longer meets the criteria for ASD, that they\’re going to be perfectly neurotypical from now on.  That\’s not how brains work, and it\’s especially not the lived experience of many girls on the autism spectrum.  We don\’t become normal, we simply learn to appear normal.  The differences remain, and the struggles continue.  They\’re just not as obvious.  

Finally, to the original point I raised.  We are, none of us, bound to our fates.  IQ is not an overall measure of success in life (or even overall intelligence), but merely a measure of how well a person will thrive in a typical school setting.  Peoples\’ brains do develop and change.  People continue to learn until they day they die.  Nonspeaking autistic people communicate, they just don\’t do so in convenient words.  

Putting someone in a box (or an institution) and saying, \”oh well, they\’ll never develop past age 6 mentally and there\’s no point trying to communicate with them or help them learn,\” is to deny their basic humanity.  Particularly at a young age, when brains are still in full swing of development, this is flatly wrong.

I\’m not saying every autistic child can grow up to be fully verbal and successful in any school, and then whatever type of work they want.  But I am saying that if you take someone\’s word that your loved one can\’t improve and learn, you\’re making it impossible for them to do so.  I hope it goes without saying that you should never do that.  Boxes are for moving objects, not for keeping people in.  

(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.)