Reading the Research: GI Misery

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.)

Book Review: Life, Animated

 Life, Animated: A Story of Sidekicks, Heroes, and Autism, by Ron Suskind, is a "my family's story with autism" type book.  While there is a small mountain of these, this one is remarkable for the particular path the autistic person took.  Most of these stories have been about "Aspergers" type autistics.  That's me, and that's most of the people I know.    

Owen Suskind, on the other hand, fell into the most dreaded variant of autism: regressive autism.  That's the one where the child seems to develop normally until a certain point, and then loses developmental progress.  They stop talking or lose tons of vocabulary, their motor skills deteriorate, they stop conveying emotion through body language...  It's a parent's worst nightmare.  Many of these children backslide all the way to being nonverbal, and that's exactly what happened with Owen.  

Most of the stories of this type of autism offer hope in terms of alternative communication devices, finding new ways of listening and seeing from a very different perspective, and above all, an ongoing struggle to thrive in a world not made for humans so different from the norm.  In some ways, this particular story is similar to those.  

However, unlike most of those stories, and thanks to his parents' willingness to incorporate their child's special interest, a literal village's worth of people and support staff, and far more resources and privileges than most families with autistic people have access to... Owen was able to master words, learn to see things from others' perspectives, become independent, and even start dating.  You are brought through the process of all of these developments.

It's a particularly engaging, well-written story, likely because the author's journalism experience is extensive.  Suskind really brings you into the headspace of each family member, including Owen, as much as possible.  You experience the struggle of the parents, the mixed feelings of Walt (Owen's brother), and grow to understand Owen just as his parents do, over time.    

This is probably the best written "my family's experience with autism" account I've ever read, and I've read a hill of them at this point.  When reading these accounts, you always have to keep in mind that the adage about meeting autistic people also applies to their families.  Every family's story will be different.  I just wish every family had the kind of resources and privileges the Suskinds had for this journey.  

Read This Book If

You want to better understand how autism can affect a family (and have a guaranteed happy ending), or want an example of how to channel a special interest (in this case, Disney movies) into helping an autistic person engage with the real world.  The Suskinds are a privileged family in a lot of ways, but their struggle is no less real or valuable for that fact.  What they managed, together, shows what could be done for every autistic person, and the good that might result.  (There is also a documentary, for people who prefer video to books)

Reading the Research: Text Message Therapy

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.)

Book Review: Come As You Are

Come As You Are: The Surprising New Science That Will Transform Your Sex Life, by Emily Nagoski, is not the usual fare for this blog, but... given how often autistic people miss out on proper sex education, the sections about the stress cycle (which are sadly highly relevant to autistic people), the importance of the subject overall, and the excellence of this particular book, I'm making an exception.  

Fair warning: this is a book about sex.  If the subject makes you uncomfortable, you may feel you should skip this book.  Quite frankly, I strongly suggest you don't.  This book contains information you would typically need to pay a therapist thousands of dollars to obtain over a very long period of time, and only after you're literally at your wits' end (because that's typically the point at which people stop putting off getting help for this sort of thing).  

Also, while the book's cover suggests it mainly covers sex from women's point of view, the information therein is useful for all sexes (intersex people exist) and all genders (hi, I'm agender!).  My spouse and I read this book together, and it cleared up a lot of falling down points we'd had around the subject, as well as improving communication between us overall.  It'll take time to improve our actual sex life, since the book revealed some serious issues we have to work through, but I fully expect positive changes and a better relationship as a result.  

One of the key points that's stuck with me?  Sex is not a drive.  "Sex drive" is a common phrase to refer to peoples' desire to have sex, but the phrase is wrong, and worse, it's harmful.  Drives, you see, are things your body demands in order to live.  Food, air, and water, for example.  However, there are zero cases of someone dying because they didn't have sex for X years.  (There are cases of people believing they're owed sex, and because of inadequately supported mental illness and access to deadly weapons they definitely didn't need, killing people and/or committing suicide over it... but that's significantly different).   

Pop culture and media teach us that the hero always gets the girl (and the kiss, and the sex, etc).  And somewhere between that expectation that women throw themselves at the hero as soon as the hero succeeds, and the stigmatization of men who haven't had sex and/or aren't some kind of sexual genius with dozens of partners, this idea that sex is a physical need came into play.   

However, the research shows us this is wrong.  Sex can be pretty great, but it's merely an incentive-reward system, not a physical need.  Another thing that fall into this category is "tasty food" or snacks, which you might find yourself wanting even when you're not hungry.  

There are a lot of really helpful insights in this book regarding how much context matters (a lot!), your physical parts (are normal!), and how stress affects everything (also a lot!).  Shoutouts to the parts that talk about brakes and accelerators, which was easy language for my spouse and me to adopt in our discussions.  

I found the sections on the stress cycle especially helpful.  Autistic people like myself are often under a great deal of stress.  The Japanese saying is, "The nail that sticks up gets hammered down."  Meaning, roughly, the person that doesn't fit in is going to get a lot of abuse until they do.  You can probably guess how I feel about that, but the point is that this book will teach you, broadly, how to allow your system to let go of that stress.  The specifics are up to you, since you have to find what works best for you.  

I could probably go on and on about the insights in this book, but in all honesty, the author will do a better job of explaining them than I would.  There are six copies of this book in my local library system and another seven (including two eBooks) in the neighboring library system.  Go get one.  

Please note: this book is not specifically written for autistic people.  It contains broad and highly useful explanations of our best (current) understanding of how sexuality works, especially as pertaining to physically female people.  Things like sensory sensitivities, communication difficulties, and consent are not covered.  You may want to refer to the resources listed here for information on these subjects.  

Read This Book

No If.  You, yes you, should read this book.  The only exception is I guess if you're 100% certain you don't want a sex life and you either don't have a partner or that partner is just as onboard with that certainty.  And even so, I'd suggest you still read the book, simply because there's a massive sea of misunderstandings around sexuality and just by existing you're subject to them.  Even if you don't expect to be having sex anytime soon, knowing the toxic garbage, myths, and flat out misunderstandings in popular culture is important.  Especially for women, but as stated above: my spouse and I read this book together, and we are both better people for it.  

Reading the Research: Improving Likability Measures

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.)

Book Review: The Social Skills Picture Book

The Social Skills Picture Book for High School and Beyond, by Dr. Jed Baker, was recommended to me by a fellow autistic person.  It's meant to be a kind of rudimentary "how to" for social skills.  Unlike most such books I've read, this one is mainly pictures rather than words.  The pictures demonstrate, in the most basic way, various common social interactions and how they should go, ideally.  They include word bubbles and thought bubbles to help people understand the pictured situations better.

This was an unusual read.  The idea, I think, is to appeal to and teach more visual autistic people.  While this category does not include me, the idea itself is sound.  Teaching in pictures rather than textwalls is a very reasonable way to try to make this knowledge accessible. I didn't love the picture quality, or perhaps the printing quality, of the book itself.  Sometimes the pictures were hard for me to parse, though that could also be my poor visual processing capabilities shooting me in the metaphorical foot.

The implementation was, um... well, probably as good as could be expected, really.  The problem with trying to teach real life social skills is that the types of reactions, facial expressions, postures, etc, vary on the person and situation.  The pictures in this book were taken of people posing for these situations, not of actual live situations.  So as good as the intentions were, as an autistic person who has learned to interact relatively successfully, I didn't personally think the pictures really conveyed the kind of visual information needed to truly generalize from.  The pictured people tended to over-act their body language and use stiltedly formal verbal language (like saying "do not" fairly often instead of "don't"). 

Obviously, doing this can help get the point across more clearly to new students of body language, but I'm not sure the method is good for anything other than the most basic introduction to the subject.  Which I guess could be the point?  But if so, where's the advanced version?  Where does someone who's mastered these basics go?  There's a great deal more to social skills than these very few situations listed in the book.

Also, despite the title, I really feel like most of the situations listed in the book are more for late elementary school to middle school, not high school and beyond.  By the time you're in high school, you should probably be familiar with these skills and trying to learn more advanced ones.  Which makes me wonder if the book is actually meant for middle schoolers and they're just being clever with psychology.  Y'know, the "well this is only supposed to be for the older kids, but you're pretty cool so we'll make an exception this time" trick that younger kids and people with low self-esteem (see: most middle schoolers) eat right up because they want to feel like they're mature and worthy.  

About the only section I read and said "yeah, sure, this is for high school and beyond" is the very last one, the one that deals with interviews.  And even then, while the advice is good, it's very very basic.  

Honestly, reading this book reminded me of how many obnoxious nuances there are to neurotypical-handling.  It's not just what you say, it's how you say it... and it's not just what skills or expertise you have, it's how well you can put others at ease.  If there's one book I have yet to see in my reading, it's a philosophical and detailed "autistic's guide to neurotypical handling" that goes indepth about the how and why of the systems and typical reactions people have.

Which I guess is a book I could probably write, given time.  

In any case...

Read This Book If

You want a refresher on the Very Basics of social interaction, or need to teach an autistic person the Very Basics of social interaction.  Parents, professionals, and teachers could all find a use for this book, assuming the autistic person in question is visually-inclined.  This book may be more approachable for some autistic people than others, and the pictures can help convey the concepts better than any textwall.  I loved the idea of this book, but in practice it's very limited, hence calling it "Very Basics."  

Reading the Research: Probiotics and Your Brain

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.)