Monday, December 30, 2019

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.)

Friday, December 27, 2019

Introducing Ought: The Journal of Autistic Culture

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.  

Monday, December 23, 2019

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.)

Friday, December 20, 2019

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.  

Monday, December 16, 2019

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.)

Friday, December 13, 2019

Worth Your Watch: Autism and the Church

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)

Monday, December 9, 2019

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.)

Friday, December 6, 2019

Worth Your Read: Dancing to Confidence

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.  

Wednesday, December 4, 2019

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.  

Monday, December 2, 2019

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.)

Friday, November 29, 2019

WYR: Using Augmentative and Alternative Communication

One of the things I've always wanted to see was an overview of Augmentative and Alternative Communication (AAC).  Those of us that don't speak or don't speak well enough to count as "normal" may rely on systems like the app Speak For Yourself, card systems, sign language, etc.  This article is not that, but it's a good primer in learning, using, and teaching those technologies.

I feel these technologies, and articles like this one, are extremely important.  Autistic people aren't the only ones who can find themselves unable to communicate verbally.  Various developmental disabilities, speech impediments, and other conditions can make these technologies appropriate and useful.

Personally, I developed speech at about the normal time, and have been able to take my verbal skills mostly for granted as I grew up.  But I found out in college that I have limits to how many words I can process.  After a certain amount of talking, my brain starts to resent having to process speech.  I have to go someplace quiet, stop using speech myself, and rest.  This led to at least one kind of hurtful interaction with a college friend, where I had to bundle her rather unceremoniously out of my apartment so I could recover.  I'm not sure she understood, and I had no idea how to explain it to her.

I have yet to learn sign language or some other form of AAC, but if anyone has recommendations, I'm open to learning.  Ideally I'd like to try one that works on an Android tablet.  It's hard to advocate for nonspeaking people when you have such a different experience than they do, and I'd like to do better.

Regardless, I'm excited to see more focus on AAC and getting nonspeaking or low verbal people the ability to communicate their thoughts.  It's a better world with all of us in it, able to share our thoughts and viewpoints.  

Monday, November 25, 2019

Reading the Research: Saving the Suicidal

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 step forward to save peoples' lives.  Autistic people often suffer from depression, or suffer horrible barrages of side effects that make traditional anti-depressants painful and frustrating, to say the least.  Ketamine has been shown to quickly treat depression, especially types otherwise unaffected by anti-depressants.  This has been particularly notable in emergency rooms, where people sometimes arrive because they would otherwise immediately seek their own deaths.  Having a fast-acting treatment available is exceedingly helpful, but most ERs and other treatment centers have been slow to use this treatment.  

This hesitance is because there hasn't been much research into the treatment.  Very few studies have looked into the effects of small doses on depression in the really rigorous manner required to make sound scientific decisions.  A study like this, looking into what would essentially be the ER's go-to treatment for a suicidal patient, is thus invaluable.  

I was particularly cheered to see the complete lack of addiction noted.  Ketamine has been compared to addictive drugs in the past by less informed groups and individuals, so it's good to see that this study noted no such effects.  

Perhaps more importantly, though, the FDA has apparently approved a nasal spray variant for the treatment of depression.  For anyone that doesn't already know: "treatment-resistant depression" is not in fact treatment-resistant.  It's merely not fixable with the standard barrage of anti-depressant pharmaceuticals.  Things like proper nutrition, exercise, time outdoors, and mindfulness can be combined to "treat" depression, but the typical treatment plan in US Healthcare is "here's some pills."  Anything that doesn't respond to pills is declared "treatment-resistant."  I have Opinions about this, suffice it to say.  

In any case, I'm going to continue to keep an eye on ketamine and its progress.  Too many autistic lives are lost to suicide.  While the systems that drive us to suicide must also change, we need our adults to survive and make the case for those systems to change.  We can't rely on parents and professionals to do it for us.  And having a fast-acting treatment for depression helps everyone, not just autistic people.  

(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.)

Friday, November 22, 2019

Autism Panel for Med Students: a summary

About a month ago, I had the privilege of speaking to a group of medical students, most of them on track to become the doctors of tomorrow.  I was asked to make a speech to introduce the subject and lead into the panel discussion of autism and medicine.  Below is the speech, a link to the handout, and my answers to the questions the panel members were given.  I'll also include a summary of what other panel members said.


Good evening, and thank you for coming.

Before we begin, a note.  We, the autistic people before you, represent a small portion of the autism spectrum.  We're the ones who are verbal enough and organized enough to sit before you in a strange place, prepared to talk about ourselves in coherent detail.  Not everyone you run into in your careers will be able to do this.

In fact, depending on how much stress we're under, WE OURSELVES may not always be able to do this.  So the first thing I want you to know is that there are many forms of communication, and what we'll do here is only the most mainstream form: verbal speech, supplemented by body language.

This form of communication is what most of society runs on, and our proficiency in it is why we were chosen to be here.  There are other kinds of valid communication, including behavior, sign language, texting, the Picture Exchange System, and text-to-speech apps.  I would strongly encourage you to acquire a passing familiarity with these forms of communication, at least enough to recognize them so you know what to Google.  (smile)  Quite frankly, I expect these forms of communication to become more mainstream as our understanding of autism and nonspeaking humans advances.

So, what is autism?  I've read a lot of books on the subject, and most of them start out with giving the DSM's definition.  That's the American Psychological Association's diagnostic manual.  And y'know, I could do that, but quite frankly, when I got my diagnosis about a decade ago, those criteria were useless.  So I'm going to skip them.  I have a bachelor's degree in psychology, and I'm going to tell you that diagnostic criteria for brain differences and mental disorders are far more theory than practicality.

You can rely on the diagnostic criteria for physical diseases like hives or measles because they're well understood.  You can't, or at least shouldn't rely on the criteria for neurological differences and disorders, because quite frankly the APA is grasping at straws.  They're trying their best, but apparently the human mind and the human brain are one of the most complicated subjects we as a species have ever tried to study.

Our current best understanding of autism relies on brain scans.  When put under an fMRI, there are functional differences between an autistic brain and a normally developing one.  Some parts of an autistic brain may be over- or under-developed by comparison to the "typical human brain."  The connections between those parts may be stronger or weaker than average.  You can get a wide variety of traits as a result of these differences in our mental machinery.  The most common ones are socially-oriented: things like difficulty reading body language, difficulty reading facial expressions, and difficulty reading tones of voice.

The difficulty goes both ways: sometimes you find flat or singsong tones of voice in autistic people, or a very flat facial expression that doesn't convey much emotion, or very rigid and uncommunicative posture.  You can also get things like gastro-intestinal disorders, diet sensitivities, sleep disorders, anxiety disorders, sensory sensitivities, executive function difficulties, and depression.

There are tradeoffs, though.  An autistic person who loves their hobby is one of the most devoted and knowledgeable people you could hope to talk to about that hobby.  As a spouse or a friend, an autistic person tends to be extremely loyal.  We tend to have strong senses of justice.  We also tend towards literal-mindedness, directness and honesty, rather than playing mind games and carefully selecting socially appropriate white lies.  Physical appearances, things like what brands you wear, how perfect your makeup is, and how coordinated your clothes are... these things mean less to us than WHO you are, and what things you like.

Finally, autistic people bring fundamentally different points of view to any discussion.  We are, in essence, different.  That can provoke misunderstandings and slow things down, but it can also be helpful.

For example, when my spouse and I finally gathered enough money to be able to house-hunt, we were told to pick some important things we wanted in a house, tell them to the realtor, and then look around until we found a house we loved.  My spouse may have been happy to do that, but I preferred to consider, in exhaustive detail, every aspect of the house I wanted to live in.

Things like 3 prong electrical outlets, the presence of a bathtub, number of bathrooms, number of shared walls, the tax rate, how the tap water tasted, the age of the roof, the amount of nature around the house, and the average time to Meijer, my parents' retirement home, and his workplace.  All of these things were excruciatingly given priorities and point values and put into a spreadsheet, which we filled out for every home we looked at.  Each home received a score at the end, which we used to help determine whether we wanted to put an offer on the home or not.

This was far more work and annoyance than most people would bother with, but I considered it worth the time so that we could find a home we would be happy in for decades.  Was all this work atypical?  Definitely.  Was it worthwhile?  Definitely, at least in my opinion.  My autism, weirdness and all, helped me find a place I genuinely enjoy living in, and my family is better off because of it.

Which brings me to my last point.  In recent years, autistic people have developed communities and schools of thought about ourselves, our difficulties, and our successes.  One of the major philosophies to come out of this coordination is neurodiversity.

Essentially, neurodiversity is the idea that the human race is better with neurological diversity.  That autism is not a disease to be cured, but a difference that should be supported and respected.  That isn't to say that autistic people don't need help, or that being autistic doesn't come with hardships.  It's merely to say that without us, you are all made less.  The human race needs people with different points of view, because it takes new and weird ideas to come up with the new and weird inventions that keep humanity moving forward.

Temple Grandin redesigned cattle facilities and slaughterhouses to be more efficient and humane.  John Elder Robison created astonishing new sounds and flaming guitars for the band KISS.  Bill Gates and Steve Jobs transformed the world as we know it with personal computers and iPhones.

Each autistic person is different.  Personally, I can't design a slaughterhouse or an iPhone, but I can stand here before you, the medical professionals of tomorrow, and attempt to bridge our worlds.  I firmly believe the world is better with all of us: neurotypical and neurodiverse together.

Thank you.


Link to the handout


Panel Questions

1.  What are you doing now or have you done recently that is a success for you - either because if or in spite of your ASD?

I went to Reston, VA, near the capitol in DC to help direct the Autism Research Program's use of US tax dollars.  They contract consumers (ie: people affected by the issue at hand) as well as scientific reviewers of various types.  Each application is reviewed through a set of processes, and eventually a final score is assigned.

From those scores, the most scientifically rigorous and most useful-to-the-community studies are chosen to be funded.  It was an exhausting opportunity, but a worthwhile one.

Most other panel members spoke about their jobs, or personal successes.

2.  Tell us about your support system.  If you want to, you can include your age of diagnosis.

My support system is complicated.

I try to eat dairy-free, because I've noted dairy products tend to send my mood into a downward spiral.  I don't know why this is, but it's a clear enough effect that I noticed.  I also have my supplements, which at this point is up to 8 pills in the morning, and 4 at night.  These include multivitamins as well as specific minerals and vitamins I tend to be deficient in.

In addition to these, I try to exercise 2-3 days a week.  I see a therapist once every two weeks, where she administers a form of neurofeedback called LENS as well as more traditional talk therapy and managing my supplements.

Other panel members spoke extensively about their families, mostly, some also about their friends.  They mentioned relying on these people to "get them," and advocate for them when they can't do so for themselves.

3.  What would you like people to know about autism?  What do you think are some common misconceptions?

Mostly, that we grow up.  The general perception of autism is that of a white male child of perhaps 6 years of age, obnoxiously trapped behind a warped pane of glass.  In fact, the average age of an autistic person is 19, and many of us are people of color, born female, and gender minorities.

Those of us that can blend into the general population often choose to do so, because of the stigma and infantilization of autistic people.  High support needs are equated with being a child or being stupid, and they shouldn't be.  But that can drive those of us who are verbal to feel isolated, and unwilling to identify publicly as autistic.

Other common misperceptions included the specific symptoms and presentation of autism.  Women in particular tend to not have the same kinds of symptoms as men, so sometimes an autistic person, or even a small child, is dismissed out of hand for not being like the "classical autism" which was described mainly around male children.

4. How do you respond in situations if you're scared or worried?  How might you respond in an ER or in a traffic accident?

This is rare for me after three decades of life, but if I have no script or sense for what I should be doing, I tend to freeze.  When sufficiently stressed or when my brain has become too "worded out", I can become nonverbal or very low-verbal.

Other panel members described being fully verbal but completely incapable of handling any decision-making.  One even said she would need to be talked down, preferably with subjects like her favorite TV show, before she'd be able to engage with an emergency situation.

Another spoke of having a completely abnormal response to a traffic accident, where the panic and stress reaction that neurotypical humans experience quite literally didn't kick in.  While the driver of her car was still locked into gripping the steering wheel, she got out of the car, inspected the damage, and found it was a very minor accident.

5.  If you are a person who experiences sensory overload, would you prefer a quiet room in healthcare?  How is the noise level/stimulation in current healthcare areas now?

I am definitely sound-sensitive.  I'm not sure there is anything that counts as a quiet room in healthcare.  I've been in hospitals, they make me fervently hope I never have to go back.  There's always people moving and talking in the hallways, the sounds of machines and medical equipment inside the rooms, the fan or climate control going...

These were nice hospitals, too.  Pleasant staff, lots of windows, art on the walls, all of that.  I can't imagine trying to heal and recover in such a place.  I'm no longer surprised when I go to visit someone in the hospital and they look terrible.  Nobody looks good in a hospital.  They're just not good places to be, to me.

There was no disagreement on this subject.  Not one of the four of us found hospitals a relaxing, pleasant environment.

6.  What can a neurotypical physician do to help communicate with a person with autism?

I mentioned this above, but it merits the repetition: learn about and be open to "nonstandard" forms of communication.  The Picture Exchange Communication System is one of these.  Sign language, text-to-speech apps, and texting itself are others, and there are more.

Other panel members noted that it's best to presume competence (ie: treat the autistic person like they're a person, and assume they know what they're talking about even if they can't express it perfectly).  They also appreciated a willingness to listen, and patience when a person has difficulty giving a succinct answer.

7.  What has a physician done for you that was helpful?  Unhelpful?

I've found self-directed care to be the most useful.  Giving me the information I need to make my own decisions, rather than simply writing a prescription and making the judgement call themselves, was empowering.  Believing me when I describe symptoms that don't fit neatly into a medical textbook also features high on the list.  I've had primary care practitioners that either didn't do this or didn't care because they had such a high caseload or just... didn't care overall.  

Monday, November 18, 2019

Reading the Research: Warding off Depression with Movement

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 movement.  Note: not even exercise, just movement.  Many of the typical US jobs don't involve a lot of movement, and once home from work, our leisure activities don't involve much movement either.  It used to be more common to take walks, or perhaps garden, dance, or participate in some kind of backyard sport.  

In this Information Age, it's much more likely you'll find people in front of the TV, playing video games, or just browsing the Internet on their smartphones.  I'm more guilty of this than most: my work is a desk job, and my leisure is usually video games or watching Let's Plays with my spouse.  None of this innately involves movement.  

I've actually tried to fold using an exercise bike into playing my video game, but the extra shaking from the exercise has proved problematic for doing anything requiring precision in the game.  I also tend to get crabby and annoyed because of the extra effort.  I think I'll probably do better if I simply try to watch Let's Plays or listen to podcasts...  but this is kind of why I hope virtual reality will soon include games that specifically require movement.  

In any case, humans evolved to be active, mobile creatures.  The lack of built in movement in our lives has consequences.  This article notes one: higher chances of having depressive episodes.  On the flip side, movement can protect against depression, even in people who are genetically predisposed to suffer it.  Finding a leisure activity that involves movement, even movement that isn't strenuous, can protect against depression, and can reduce the amount of suffering you experience.  

What leisure activities do you have in your life?  Can you work movement into them?  Are there activities involving movement you might want to try?  

(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.)

Friday, November 15, 2019

Fortune Cookie Rant: "Uniqueness"

Fortune from a fortune cookie: Your uniqueness is more than an outward experience.
Fortune cookie: "Your uniqueness is more than an outward experience."

I went to a Chinese buffet this week.  This came out of my fortune cookie.  I think the creator of this "fortune" (note: not a fortune, not even advice) meant to be complimentary.  Like, "I, this little scrap of paper with some semblance of cultural authority, written by some American wherever this cookie was produced, believe you (a stranger I've never met) to be truly unique."  In fact, when I showed it to the friend I'd gone to the buffet with, that's exactly how they took it. 

Me?  I looked at the little scrap of paper, scowled, and said, "Well DUH.  Ugh." 

So here's the thing about being autistic and being able to blend in somewhat.  Short of when you're alone, you pretty much never get to forget about it.  You are always measuring how you're doing, how you're interacting with others, how others are interacting with you, what the environment is like, etc.  This is not, frankly, an enviable position, and I don't enjoy being in it.  I recognize it as a necessary evil in order to keep the broad neurotypical majority comfortable, so they'll treat me like I'm a human rather than a child or something subhuman. 

Think I'm being harsh?  Here, read thisOr thisOr even this.  Autistic lives are lost all the time to situations like this.  What doesn't usually make the news is the other costs of not fitting in.  Things like not being able to keep a job, and being unable to find friends.  The depression and anxiety that come with those situations piles complications on top of an already complicated life. 

Humans are pulled two ways, in terms of this question.  We're a social species.  We like to fit in, to be understood, to be part of a community (sameness).  But we also like to stand apart in good ways, be valuable for ourselves, be unique (difference).  Two sides of a line spectrum.  Most people fall somewhere in the middle.  I fall somewhere towards the "uniqueness" side and farther away from the "fits in" side.

I got my diagnosis about a decade ago.  After I finished being confused about how the DSM criteria didn't really describe me, I experienced a deep surge of despair and bitterness.  I'd spent from about age 10 to about age 20 trying to learn how to fit in, without compromising myself too much.  Receiving my diagnosis was the death knell for my hopes of ever finding some place to fit in.  I'd tried very hard, but the answer was that it was never going to be enough. 

Am I unique?  Absolutely.  Everyone is to some extent.  No two humans are the same.  Am I more distinctively unique than most?  Probably.  I have a strong personality and will, definite viewpoints and opinions, interests, etc.  I don't need a fortune cookie to tell me I'm a unique person.  Mostly, it just underlines to me how different I'm always going to be. 

My best hope is to try to build a world where it's not so isolating to be so unique.  

Monday, November 11, 2019

Reading the Research: Magical Selective Volume Control

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 explains a magical superpower most allistic/neurotypical people have.  Have you ever had to focus really hard on a single conversation in a really crowded, loud room, like a sports bar, or a club, or even a noisy gymnasium?  Maybe it was tough, but you managed to pick out that one person or conversation amidst the barrage of other sounds and conversations.  Cool, right?  Helpful?

Turns out your brain does this by selectively amplifying the sound of the conversation you want to hear.  Kind of like turning up a particular microphone on the sound board while turning the main volume of everything else down. That's a superpower, and it's one many autistic people do not have, or don't have as great an ability in as normal humans.  

On one hand, this means we're more sensitive to changes in the environment, and can often track down pesky noises others might miss.  The faint but present rasp in the whine of a refrigerator may herald a part going bad, and we'll know it before the part fails and the contents of the refrigerator are lost.  Or we'll be able to detect the sound of a belt going bad on a car long before you actually need to replace it.  I've done both of these in the last few years. 

On the other hand, a crowded party or sports bar with lots of chatter and noise can be nearly impossible to have a conversation in.  I even recently had trouble hearing a friend talking as we sat in front of a TV with YouTube videos running.  The TV wasn't even up that loud, and she wasn't even talking that quietly.  I just couldn't separate what she was saying from the unpredictability of the videos.  

It's not that I don't have the ability at all, though it sure feels like it when it's failing me.  But on bad days, I might as well not have it.  All the noise in the world comes to my brain unprioritized and bewilderingly loud.  On good days, I do have some of that automated prioritization and volume control that everyone else can take for granted.  It's a really cool ability, and I enjoy having it when I do.  

(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.)

Friday, November 8, 2019

WYR: Gift or Disability?

Healthy.  Independent.  Normal.  These three adjectives summarize the US ideal for an adult human.  Look very carefully at these three adjectives. 

We strive very hard for these, but if we ever truly qualified for them, it was a very fleeting qualification, perhaps in our early 20s.  In terms of health, the instant you develop any kind of chronic health problem, like migraines, sleep disorders of any kind, mental illness, you've lost that ideal and will likely never have it back again.  The vast majority of US citizens do not count as "healthy."  Our bodies break down over time, or come with genetic quirks that can cause problems.  Perfect health is a fleeting illusion.

Independence is a funny one.  Unless you want to live alone, off the grid, in some cabin you built yourself without tools in the middle of nowhere, growing and foraging your own food and drinking your water out of a stream or lake, you are not independent.  We like to take things like roads, saws, screwdrivers, education, and the Internet for granted, but each of them involves other people.  Usually a lot of other people!  You rely on those other people every time you use these things. 

I feel very confident in saying literally no one who reads this post, even if it was printed out on paper and brought to far corners of the US, is independent.  Independence is an illusion. 

Normalcy, well...  I have yet to run into anyone who can define normalcy in a way that doesn't sound stupid at best and horrifyingly straitjacketing at worst.  We can safely say I have a bias here: after all, I've been autistic since before I was born, and so I've never been "normal."  I just don't see the point. 

Yes, it's good to have places where you feel you belong, but usually the people deciding who's included aren't going to include the full range of human diversity, even diversity like "I like this other sport" or "I really liked this unpopular song because even though it's bad, it spoke to me personally." 

As such, autistic people are almost invariably left out... but everyone, even neurotypical people, have the experience of being excluded at some point in their lives.  From what I've heard and read, it's about as fun as being excluded for being autistic. It's just a less systemic, less regular occurrence than what often happens to us.  You don't ever get to always be normal.  And honestly, given the vast range of human diversity, I kinda think normalcy is also an illusion.

And there you go.  What we idealize, we can never be for long, if ever.  I have a lot of problems with the medical autism mode of thought, but I do at least recognize that it addresses very real disabilities and support needs.  Neurodiversity is the pushback to the stigma that medical autism has forced on us.  It is, like the social model of disability before it, a much healthier, though incomplete, philosophy. 

If we welcome everyone, then everyone, neurotypical or not, will be welcome.  If we accommodate and support health differences, everyone, perfect health or not, will be welcome.  If we recognize that everyone relies on thousands, even millions, of other people every day, we won't find higher support needs so offputting, and may find ourselves learning and growing as people.  

Monday, November 4, 2019

Reading the Research: Brain Differences

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 actually a set of articles, detailing different findings about the autistic brain from studying brain tissue samples.  Theories of the past about autism have focused rather intently on genetics, with hopes that if we could just figure out which genes are associated with autism, we could figure out how autism works.  

Those theories have borne no fruit.  There are apparently hundreds of genes associated with autism, and those genes are not shared overall.  Furthermore, genetics itself is a far more complicated matter than simply "this gene means brown eyes, that one means blue eyes."  

If genetics is the "nature," epigenetics is the "nurture": what kind of environment you live in may turn genes on and off.  Your genetics may predispose you to have depression, but if you grow up in a stable, loving environment with plenty of movement and good nutrition, and suffer very little by way of trauma, that gene may never activate and you may never need anti-depressants.  

Instead, it seems the key to autism may be in neurology: differences in the connections between parts of the brain, number of neurons, and other brain structures.  These features can vary quite widely, which goes a long way to explaining why autistic people ourselves vary so widely.  

(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.)

Friday, November 1, 2019

WYR: Planning an Inclusive Event

It's weird to me that this list of suggestions is 28 entries long and still counts as incomplete.  It's because there are so many forms of disability, and trying to address them all individually is extremely complicated.  And the bigger the event, the more of these suggestions apply, because the more kinds of people you need to serve. 

However, knowing your audience is important.  If you're hosting an event specifically for members of the Deaf community, you might not need to check whether the location has a wheelchair ramp or remove any fragrance dispensers, unless you know some of those people also have physical access challenges or sensory sensitivities. 

In general, I'd say it's best practice to be safe rather than sorry, and to do as many of these as you can manage.  But I do understand that in practicality, it's complicated and can be exhausting to merely run the event, never mind going down a list of 28 things to make sure you have as many accessibility boxes checked as possible. 

Monday, October 28, 2019

Reading the Research: Psychology Has A Long Way To Go

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 far psychology has yet to go in terms of making scientifically valid diagnostic categories for mental illness and neurological differences.  This study focused on obsessive-compulsive disorder (OCD), which sometimes has a crossover with autism.  But it's also relevant because quite frankly, autism is a trashbin diagnosis.  

When a diagnostic label can be equally applied to myself (an independent, speaking adult with a house and a car) and to a 9 year old who cannot be toilet trained, has not progressed emotionally past age 4, and does not speak... something has gone very wrong, scientifically speaking.  That diagnostic label is all but useless.

I'd known this was the case with autism for years, but it surprised me that apparently the same is somewhat true of OCD and other mental disorders.  There are many kinds of obsessive-compulsive behaviors.  The stereotypical one is repetitive handwashing, but the article also calls out binge-eating, excessive shopping, and various types of addiction.  

Let me particularly call your attention to this paragraph:
"In the current study, patients met an average of 3.7 concurrent diagnoses.  Disorders are also highly heterogeneous -- which means that two patients might have the same diagnosis, but have little to no overlapping symptoms and might respond in entirely different ways to the same treatment."  
To me, there were two bombshells in this paragraph.  First, 3.7 diagnoses on average?  That's a lot of metaphorical alphabet soup.  Perhaps I shouldn't be surprised, given that I think they gave me 5 diagnoses at the end of my testing.  I reject one, but that still puts me at 4, which is right around that average.  In other types of science, you don't need 3.7 labels to describe a phenomenon.  You have a classification: meteor, and three types: iron, stone, and stony-iron.  We've been studying the human mind and brain for over a century, and apparently the best we can manage is 3.7 diagnostic labels...

...and secondly, those diagnostic labels aren't even self-consistent!  I'd always kind of assumed autism and ADHD were relatively new and not well understood, but that other labels weren't so absurdly different in terms of the mixture of people that fall into them.  Apparently I was very wrong, and much of this is definitely still theory, not practical application.  

I probably should have known better given how many different therapies there are for depression.  There's pharmaceuticals (many and varied!), neurofeedback, supplementation/vitamins, exercise, talk therapy (like CBT), ketamine, and deep brain stimulation, to name a few.  Here's a link to a similar "wow, this diagnostic label sure has a lot of different symptoms!" study for major depression.  

Apparently the human brain, being a self-reprogramming computer that generates consciousness somehow, is possibly the most complex thing we've ever tried to study.  I just hope, for all of our sakes, that it doesn't take too much longer to get a handle on what we need to understand to help people.  

(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.)

Friday, October 25, 2019

I Don't Do Excitement: Handling Emotions While Autistic

I had kind of an interesting and educational experience last Tuesday.  Briefly, I was invited to help lead and speak on a panel to educate med students about autism.  It was myself and three other autistic people.  This was, thank God, the last major thing this month besides a dual party for myself and a friend.

I wrote the bones of my speech the day before, the speech itself the day of, and then I spent another hour or so putting together a handout with further reading and the main points of the speech.  Because I've been a student and I swear to you, lectures are the least useful way to convey information.

After all this was done, I had about two hours before I needed to leave.  This left me sitting in anticipation.  I assessed the emotion absently, labeled it anxiety, and proceeded to put on depression music to shift my emotional state.  Basically it's the kind of sad/angry music you can kind of drown in, which helps you feel understood and also feel calmer, though not better.  I've done this before, and it works quite well.

But I thought about it as I listened to the music, and realized that I was probably going about things wrong.  The anxiety feeling was uncomfortable in its strength, but the situation I was heading to wasn't really a bad situation.  It was simply new and important.  If I kept the depression music on, I would be less anxious, but I'd also approach the situation with resignation and sadness.  That wasn't a good attitude to bring to these medical students. 

I also recalled the podcast I'd listened to a few months back, which mentioned that emotions can be boiled down to two spectrums: wound up-calm, and positive-negative.  Excitement, you see, is merely positive anxiety.  Physiologically, they're exactly the same.  The difference is in how you mentally view the situation.

This realization made me realize I honestly don't do excitement.  I do anxiety.  All excitement in my life has likely been mislabeled anxiety or worry because it's what I'm used to.  Granted, the excitement-to-anxiety ratio is probably heavily skewed toward the latter, but I don't honestly know. 

The end result was that I was so used to feeling bad and reading wound up as anxiety, that it didn't immediately occur to me that I should maybe just be happy for myself that I had this opportunity. 

After I thought about this for a while, I put on some more neutral, semi-wound-up music and sniffed my calming perfume scent to take the edge off my wound-up-ness.  I then began playing a favorite puzzle game on my phone until I could be distracted with other things and needed to go. 

I did manage the speech, though I was still pretty...well, it felt like anxiety again frankly, because there was a whole classroom of college-age students looking back at me.  I was a bit busy just trying to read the speech and not rush to question whether it was excitement or anxiety. 

That's something I'll have to look for, going forward.  I'm not sure if I'll continue to have to do it via deductive work (i.e.: this situation is positive, I should be excited not anxious), or if I'll eventually develop a sense for the difference. 

Either way, this is progress.  

Monday, October 21, 2019

Reading the Research: (Re)Building Hope

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 talks about the importance of hope in a therapeutic setting.  It also mentions hope's relationship to optimism and self-efficacy (in plain speech: how much you believe you can affect your life and surroundings, or how much control you feel you have).  The specific disorders studied were anxiety disorders, which occur alongside autism with a unfortunate frequency.  

For anyone who might not be familiar, Cognitive Behavioral Therapy (or CBT) is basically the go-to therapy in the current age.  There are a dozen or so schools of thought in therapeutic psychology, but when each was put to the test, only two consistently and repeatedly showed results: cognitive psychology, and behavioral psychology.  

The first focuses on analyzing your thoughts, identifying patterns that destabilize you and giving you mental tools to shift your thinking.  The theory is that if you shift how you think, positive change will follow.  The second is more interested in your behavior: changing what you do, or how you do it so it's more supportive to a healthy and happy life.  The theory is that if you positively change your behavior, your thoughts and life will follow suit.

Both theories worked, so people proceeded to combine them.  In addition, rather than hyperfocusing on a person's past, as some schools of thought did, CBT is firmly focused on the present.  The past is relevant because it's influenced the present, but the interest is improving the here and now.  The emphasis is also to help you develop your own mental toolkit, which can mean less need of therapists over time and more stable day-to-day living.  It's a good therapy, and I recommend it to anyone.

It's often the case that people only come to therapists when they're out of options.  At that point, their hope is a flickering candle, which makes it difficult to create positive change.  As such, a therapist's job is often to prop up the person's failing hope, and to offer more reasons to be hopeful.  Doing the work of the therapy, which creates positive change, can then lead to more hope and increased recovery, which turns into an upward cycle as it repeats. 

Results like this are probably why institutions upset me so much (I don't have personal experiences with them, unlike this person or this person).  They're the death of hope for the person locked away.  Institutions are psychologically harmful: they destroy self-efficacy and decay hope.  They don't allow for personal growth or improvement.  They are merely prisons for people who don't fit in.  This is one of many reasons why most autistic advocates call for the end of institutions.  

(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.)

Friday, October 18, 2019

Book Review: The Partner's Guide to Asperger's Syndrome

The Partner's Guide to Asperger's Syndrome, by Susan Moreno, Marci Wheeler, and Kealah Parkinson, is pretty much what it says: a book that tackles the challenges that may be faced by couples where one partner is autistic.  The scope of the book is somewhat limited in that it focuses intently on male autistic partners with female often highly socially-proficient neurotypical partners.  They acknowledge their advice here is limited to that situation, and autistic-autistic partnerships or female-autistic partners with male NT partners may have different situations to handle.

That said, some of the advice given here was broadly applicable regardless of the partnership composition.  There are certain tendencies addressed in this book that often apply to autistic people.  In many cases, these were exaggerated version of traits I sometimes display myself but could clearly see why they were painful to the neurotypical spouse or partner.  This similarity made the book rather painful for me personally to read, but I expect it would be rather enlightening for people who don't have an innate understanding of these behaviors.

Included sections are things like differences in communication, social skills, executive function, sensory processing issues, how to cope with stress, parenting, and common situations a NT spouse may find themselves in.  All included sections seemed highly relevant to the book's overall message.  The authors even attempted to give the book some balance by including a "positives and negatives" chapter about autistic traits.

I appreciated this effort to present the strengths an autistic partner can bring to a relationship, but I feel that overall the book focused intently on our deficiencies.  I felt rather sad and like I'm a broken human as I read the book, matching some of my tendencies to the stories of dysfunction in various real and fictitious relationships described in the book.

I feel like this wasn't really the authors' intent, and it's possible I'm being oversensitive on the subject.  After all, this is a book to help NT partners handle communication breakdowns and manage living with someone very different than oneself... it's not a book celebrating fully functional relationships that have few problems.

My sadness aside, the book had valuable (if rather brief) information on all the subjects it addressed.  I would suggest this as a starting point for a partner, and then to follow up on specific questions and subjects.  Like, if the autistic partner has severe rigidity, there might be specialized resources for that.  Or they might have touch sensitivity but not visual or sound sensitivity, so you might look into a book or expert who knows a lot about that subject.

The last thing that struck me about this book is that it strongly recommends finding three therapists: one for the autistic partner, one for the NT partner, and a relationship counselor for the relationship or marriage.  The authors also caution the NT partner to find a therapist that understands autism, because otherwise their concerns may be waved away as being a worry-wort or being overbearing.  I have no personal experience on the matter, but I can definitely see something like this happening, and I wouldn't wish it on anyone.

Read This Book If

You're the spouse, partner, child (if interested), or friend of an autistic individual.  Especially if the autistic person is male.  Even if they're not, the information here is valuable and presented with far less negativity and personal trauma than books I've read in the past.  I'll likely recommend my spouse read this book and see if the added perspective helps him handle my less normal moments.