Reading the Research: Special Diet Isolation

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 seems massively appropriate for Christmas, which makes me sorry it didn't come up earlier.  Events are often a minefield for autistic people and our families.  Usually when that's said, you think of awkward social interactions, unwanted hugs or touching, and meltdowns due to over-socialization.  All of those things are valid isolating factors for celebrations, but this article touches on a less-considered one: the feeling you get when delicious food is served and you can't have any.

Special diets are commonplace in autism circles.  Whether it's a proper food allergy (peanut allergies, gluten intolerance, or lactose intolerance), or something odder, like how dairy just tanks my mood.  You can also have religious/cultural restrictions, like how Hindus usually don't eat beef, or moral restrictions, like my tendency to avoid meat unless I know it was sourced humanely and in an environmentally-friendly way.  

It can be really frustrating and isolating to look at the spread of holiday foods, lovingly prepared, and have to whittle them down one by one, hoping to find even one you can safely eat.  Does the soup have bacon bits on it, making it vegetarian-unfriendly?  Are there gluten-filled croutons on the salad?  Did someone put vinegar into the marinade for the roast?  Perhaps there's alcohol in the dessert?  Citric acid in the drinks?  You don't know, you have to ask or avoid the questionable dish entirely.  The more dietary restrictions you have, the more isolating the experience.

It also makes going out to restaurants complicated.  Between myself, my spouse, my mother, and my uncles, there's only a couple restaurants that offer options for all of us.  And the area I live in is positively swarming with restaurants, so that's both sad and impressive.  

It's why I try to put extra effort into knowing what restrictions my guests will have, when hosting parties or setting up outings.  Nothing ruins the experience like feeling left out, as I'm very well aware.  For my wedding, thankfully, the restaurant we rented out was exceptionally flexible and adroit at handling dietary restrictions.  So there were options for everyone, including one poor guest who had both dairy and gluten intolerances.  We'd seen him go hungry at a previous event and were very insistent the sad occurrence not repeat itself.  

At this point I think running a larger party would involve having a spreadsheet with each person's dietary restrictions.  Maybe that's a good idea overall anyway, especially since it's sometimes weird stuff like citric acid (seriously, it's super common, look at the ingredient lists on various things and boggle along with me), or something absurdly commonplace, like lettuce.  It'd be annoying to compile, but probably worthwhile in the long run, I expect.

(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.)

Introducing Ought: The Journal of Autistic Culture

https://scholarworks.gvsu.edu/ought/

This is a link to a newly launched journal about autistic culture.  Rather than draw exclusively from scholarly neurotypical outsiders analyzing autistic culture, it draws directly from the culture-makers ourselves.  This is, in my opinion, a fantastic idea, and I hope this journal lasts many years.

Ought contains everything from poetry to opinion pieces to artwork.  It talks about everything from what autism is to education and social norms. and included at the very end is a short book review I wrote about On the Edge of Gone, by Corinne Duyvis.

Each piece can be read, for free, by clicking the "pdf" icon.  Please especially note the call for submissions at the very end: parents, teachers, professionals, and autistics alike can all contribute to this journal, and your perspective is valuable.  

Reading the Research: Sciencing Yoga

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 both a significantly valuable activity for autistic people and others, and at least some scientists' attempt at understanding the benefits of mindfulness.  This is a meta-analysis, which is to say that instead of doing their own science, these scientists instead reviewed the existing studies on the subject.  Such studies are done in hopes of locating an overall trend in the data, and to help direct future research.

It's been known, at least unscientifically, that yoga is good for you.  It hasn't been known precisely how.  Practitioners themselves have opinions, of course, but nothing you could show on a graph, brain scan, or chart.  Apparently some of the studies that were reviewed here included brain scans, so various parts of the brain have been called out here as being affected positively by the practice.  

Effectively, yoga apparently helps you develop a more efficient, effective brain.  Mostly what they focus on here is how the effects are somewhat similar to aerobic exercise, which is unusual since yoga doesn't usually have much in common with jogging, swimming laps, etc.

My best guess?  This is an intensive world we live in.  Distractions abound.  We don't get enough exercise.  Participating regularly in a structured form of mindfulness strikes me an as excellent counterbalance to our society's normal.  Practicing mindfulness on a regular basis can improve your ability to handle stress (which autistic people usually have more of), anxiety (same deal), emotions (sometimes difficult for us), and self-awareness (also sometimes difficult).

It's something I'd like to do better with, and I'm trying daily journaling on an app on my tablet in hopes of starting the process.  I'm a little overwhelmed with the sheer variety of yoga classes available, and the last time I tried a proper class at a friend-recommended place, it wasn't a beginner's class and I exhausted myself and finished the class frustrated and angry about being so terrible at it.  So perhaps I should do more research and find someplace that actually offers beginner classes...

(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: Spark

Spark: The Revolutionary New Science of Exercise and the Brain, by John J. Ratey (MD) with Eric Hagerman, is a deep dive into the idea that the human body is meant to move.  It explores this old wisdom with new science, explaining even into the chemical names and functions of how our body works.

This is a lengthy-feeling book, and it's not written for a general audience. Instead, it's written for fellow academics and professionals... which is to say, the whole book is one giant textwall, with chapters.  So while the knowledge in this book is valuable, I can't actually recommend it for general reading.  Instead, I'll do my best to lay out what subjects are covered in the book, and you can, if you wish, buy the book or borrow it from the local library and read the relevant sections.

So first, the book talks about students and learning.  There's a school in Illinois that has implemented exercise every day before classes, which set off the "spark" the book is named for.  The result was healthier students, feeling better about themselves, and most relevantly to the school system: improved grades.  The author talks about chemicals that are released when your heartrate is elevated and your muscles are working. 

Then he talks about stress, and how a little stress is good but too much is bad, and the specifics of those mechanics.  Then the book continues on to a section on anxiety, and some of the doctor's work with clients suffering anxiety, and how movement can reduce or replace the need for medicine.  Same with the section on depression, except that he doesn't recommend replacing your medication, but supplementing it with exercise. 

After these, the book moves onto conditions one might not otherwise associate exercise with.  There's a section for ADHD, and the author notes that he himself has ADHD and marks some personal experiences he's had regarding that and movement.  Then the next section is on addiction, and the next on hormones, and finally, aging. 

He ends the book with some general recommendations for brain and body health, noting that there is no "one true exercise plan for brain and body health" for all people that might ever want to benefit from this knowledge.  Your age, type of exercise activities preferred, mental health, and other challenges are relevant when developing a plan for yourself. 

Read This Book If

You can parse academic textwalls and want a better understanding of how exercise can help Everyone.  Seriously, this book could be summarized in the sentence, "Exercise is great for all kinds of people and conditions and everyone should do it!"  You miss all the science in that summary, and specific recommendations and condition-related details, but that is honestly the gist.  I found the information extremely valuable, but the presentation was exhausting.  

Reading the Research: Support

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 stresses the importance of love and support in the lives of all humans.  My personal take on it is that the more difficult a person's life is, the more important feeling loved and feeling connection with others is.  Being autistic counts, because you tend to fit in so poorly and receive pushback for it, but things like chronic pain, addiction, anxiety, and depression also fit the bill.  

I've had a complicated experience with this sort of thing.  It's not that I've never felt connection and love like this study describes, but it's rather rare.  This is an era of distraction, with phones constantly making noises to signal new information being available.  That means most of my attention is either on what I'm immediately doing (because I have to focus harder than most to do it), or on those little distractions that add up over time to large chunks of my day.  

The upshot of all this is, I suspect, that I simply don't notice most of such occurrences.  I certainly don't feel warm and fuzzy about the ones I do notice, though I always try to verbally express my appreciation.  It's an open question as to whether I'm simply incapable of said warmth and fuzzies, or if I merely don't devote the time required to contemplating them long enough to achieve that emotion.  I've always felt like I'm a more somber person than most, even to the point of being coldly logical when growing up.  I've "warmed" so to speak, as I've found more people that accept me as me, but it's still probably true to some extent.  Autism thing?  Modern busy-ness of life thing?  Not sure.  

Either way, I'd pay money for an app that would replicate this study.  Something that reminds me at random (only during hours I'm awake, natch) to assess whether I feel loved and what incidents I can recall where love was expressed to me.  Probably just like once a day reminders, rather than 6x like the study does, lest I get very annoyed.  I wonder if there's a way to make Google Reminders do that.  

This idea goes on the "if you're ever Very Serious about being happier, consider doing this..." mental board I have going, along with a thankfulness journal, meditation, and regular daily prayer.  

(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.)

Worth Your Watch: Autism and the Church

https://www.youtube.com/watch?v=VKkzC4KDz3E

This is probably the single best explanation of autism I've ever found.  It contains a very brief explanation of autism's history, explains the problematic parts of our past understanding of autism, and even included the latest development with Hans Asperger.

He also includes a better explanation of the autism spectrum (ie: not a linear spectrum), a mention and unpacking of the autism adage, a much-needed reminder that meltdowns are not tantrums, commentary on the gender distribution of autism, and some interesting points about sensory differences.

He's remarkably careful about his language choice.  Paired with the early introduction, the fact that he "gets it," and mention that he has personal connections and interest in autism, I suspect this speaker has some significant connections with the autistic community.  Also some significant debates or discussions, possibly heated ones.  I also laughed at around 27 minutes, where he starts to apologize for taking such a long time to describe autism, then stops and corrects himself to note that he's not sorry.  That's a very autistic thing to do and it made me very happy to hear someone so respected and valued be so thoughtful, honest, and direct about his thought process.

The speaker explains autism in three sets of characteristics: social and communicative differences (mostly what the DSM focuses on), sensory differences (like touch or sounds hurting), and what he calls systematizing differences.

I found this last category/trait set fascinating.  I've never heard autism described in this fashion, but the way he explains it makes perfect sense to me and also unifies my ability to predict people and see how mental/emotional cycles work with people that adore train schedules and putting objects in order.  It's so much of a better explanation than Temple Grandin's "some people think in pictures" theory.  (She's since revised it into several different types of thinkers, in fairness.)

Not included in his definition of autism was anxiety, depression, suicidal tendencies, etc.  He does make mention of these things, and notes their incidence rate is higher in the autistic population, which is quite accurate.  But he doesn't include it as a core feature.  This is correct, because most often our depression and anxiety is externally caused.  We don't fit in, people treat us poorly because we don't meet their expectations, and suffering results.  Too much of that, and you get anxiety, depressive disorders, and suicidal thoughts.

I also appreciated his explanation of person-first language and his note that most autistic people prefer to be called "autistic people" rather than "people with autism."  He didn't quite nail the full reason why we tend to prefer that, which is that with all the fearmongering and searching for a "cure" for autism, some of us really have to emphasize that without the autism, we wouldn't be who we are.  You can't just peel the autism off, it is intrinsic to who we are.

Please note, the autism adage applies here. Some autistic people do prefer the person-first language.  It's always best to ask a person's preferences.  I tend to use both, but favor "autistic person" over "person with autism."  If you somehow pulled the autism out of me, I would not be the same person.  Actually, I suspect I would be a significantly more boring, less thoughtful, and less valuable person.  Like pulling all the ground meat out of the meatloaf.  What you have left is technically edible, but the substance is gone.

I was somewhat surprised Mr. Macaskill didn't address specific parts of the Bible that directly deal with disabilities.  There's Jesus healing the sick, the blind, the lame, etc.  Disability in the past (and somewhat, the present) is considered a failing on the affected person's part, even a sign of insufficient faith or sin.  Perhaps he didn't feel the issue was widespread enough to address?  He did address the value and worth of autistic people, our support people, and other disabled people, which addresses the issue somewhat, I suppose.

Lastly, I really appreciated the speaker's take on reading and interpreting the Bible.  I'm more used to the fracking approach he describes, but what he describes as the better alternative is far superior.  I wish that every Christian would learn and internalize this method of interpreting the Bible.

Overall, I loved this talk.  It gets so much right, and I wish it was searchable on YouTube properly.  But apparently Wheaton College didn't want it to be, so you can only find it if you're linked to it, the way a friend did for me, and I have now done for you.  Enjoy!

(Further resources from Wheaton College, including ones for schools, churches, and families, are located here)

Reading the Research: Modulating Brainwaves and Attention

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 explores a use for neurofeedback.  There's been some rumblings of this sort of thing here and there in my research feeds: using neurofeedback and other brain-focused non-chemical interventions to augment function, rather than treat problems.  In this particular case, the study focused on attention, which I expect could be used to help people with ADHD and anxiety (both groups tend to include significant autistic populations). 

As you may know, I've been doing neurofeedback therapy for about four years at this point.  It's a specific form of neurofeedback, called LENS (Low Energy Neurofeedback System), and it's passive rather than active.  That means it's done to you, and you don't have to do anything in particular or focus on anything or try to accomplish anything on a screen.  It's improved the connections in my brain, and made it so I project facial expressions better.  In turn, this allows me to smile at cameras (couldn't do that before) and communicate better with neurotypical people.  

This study was done with an active neurofeedback, training the participants to modulate their own brain waves to some extent.  Specifically, it focused on suppressing alpha waves, which are associated with attention.  (Here's an explanation of the types of brainwaves we've identified.)  The result of this training exercise was improved attention and focus.  I would be curious to see if these effects translated outside the laboratory, and I'd bet my whole house that people in college and grad school would be extremely interested in benefiting from that effect.  Especially around finals time.  

(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.)

Worth Your Read: Dancing to Confidence

https://www.nytimes.com/2019/11/19/well/family/autism-children-dance.html

I really enjoyed this article.  Autistic people are not known for our grace and coordination.  Movement is for everyone, though, and apparently these ballet teachers have the patience, kindness, and background in special ed to make it work. 

I'm reminded of my stint in dance skating.  These were the four wheeled roller skates, at an old rink that had seen better days but was still kept up with care and love.  I attended lessons with some friends there for a time.  I started out fairly clumsy and terrible, but after months of trying (and bruises, and frustration), I was able to learn to skate on one foot and do simple jumps and tricks.  This was not wholly because of my perseverance.  It's because Breck, the teacher, was a patient and encouraging man.

I don't have the physique to be a competitive dance skater, and I never progressed beyond a certain level.  But even as poorly coordinated as I started out, I learned.  This was well into my teens, and past the point when I would be able to really change how I walked and moved overall.  Imagine if I'd started younger. 

Balance was always a tough problem for me.  I've had to look carefully where to put my feet when I walk, since I was quite young.  Even on sidewalks.  I learned how to ride a bike, but it took me longer than most people, and there was a lot more fear and terror because of that whole "falling over" problem.  Like riding a bike, skating is easier if you have some momentum to help stabilize you. 

Dance skating mostly follows patterns and rules.  I suppose ballet and classical dancing does as well, to some extent.  I've read in various places that dance is absolutely fantastic for your health and wellbeing.  In part because it has a spontaneous component, it's also good for your brain. 

In addition, people feel better about themselves when they succeed at something they're invested in, in their lives.  It increases their confidence and their belief in their own agency and ability to do things for themselves.  This is particularly important for autistic people, whose confidence is regularly undermined by social difficulties

...I suppose you're never too old to try something new.  Perhaps I should try some form of dance and combine exercise with leisure.  

Legwork and Life: the Familyening

This is Legwork and Life, where I track the legwork and opportunities in my career as an autistic advocate, and also describe parts of my adult autistic life, including my perspectives on everyday problems and situations.

This L&L is to note that my life has significantly changed as of last Saturday.  We went down for Thanksgiving to celebrate with my spouse's family.  That was significantly exhausting and I'm still recovering this week.  But we also came back with Chris' younger brother, Ryan.  

The area we live in has a lot more by way of job opportunities and educational opportunities than where he was living, so he'll be living in our spare bedroom for up to two years while he gets his feet under him.  Like me, he's neurodiverse, and may need some extra support for a time.  Unlike me, he's been able to keep a part time or full time job for longer than a year in recent memory, so that bodes well for his success.

It's a major change, as I'm not great at sharing space in the first place.  My spouse should probably get a medal for putting up with me.  I think it'll be okay overall, as he has his own space and we pointedly tried to hammer out basic rules, which he read ahead of time and was okay with.  Regardless, though, it'll be an interesting (and challenging) experience.  

I tend to spend a lot of time home, which also meant being alone prior to this.  Depending on how quickly he gets a job, this may or may not be disrupted too much in the long run.  For now, my ears keep picking up on noises I wasn't expecting, because he has friends he chats with via the Internet and he also moves around the house sometimes.  I'll probably adjust to that in a week or so.  In the meantime, at least for sleeping, I'm looking into using MyNoise more, due to its excellent range of white noise generators of all kinds.  

I find the rain options particularly soothing, but really, any of them help tone down how much I can hear, which helps.  It's a great resource.

Mostly, I'm just hoping this goes well, and that I'm not too big of a grump or a jerk in the process.  

Reading the Research: Parental Involvement in Education

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.

I'm a little wiped out from the Thanksgiving trip, and there'll probably be a Legwork and Life this week due to Major Life Event, so bear with this short RtR.  

Today's article highlights the importance of parents in school achievement.  

This study was done in a school system that's a bit different from the US system.  In the US, you automatically go to the public elementary school, middle school/junior high, and high school for the area you live in.  Your parents can opt to pay for a private school at any of those stages, but your taxes still go to funding the public schools even if you do that.  Some schools in the US are more prestigious than others, or offer education with a religious bent, so some parents prefer this over the public option.

In Croatia, where this study was done, elementary school covers up to high school age, and there are two types of high school (secondary school): the kind that prepares you to go on to college/university, and the kind that prepares you to go right to work after finishing.  Germany has a similar system, but it's four-tiered in terms of secondary school options, with only the highest letting you advance to college.  

All this to say: it's a different system, but there's a measurable impact in school success and achievement, and it's parents.  Parental support, not fanciness of school, class size, or even GPA, was the predictor of the child's desire to advance to higher levels of education.  I thought that was kind of an interesting takeaway, in a world where people puff and preen about this college and that private high school. 

Going to college isn't for everyone, especially now that (in the US) it costs you a mortgage-level commitment you'll pay back for the rest of your life.  But cultivating a love of learning is good for everyone, regardless of their eventual academic achievement.  We learn something new every day, and the world changes around us a little bit every day.  Keeping up with that is so much harder if you don't want to accept or engage with 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.)