Monday, September 16, 2019

Reading the Research: Beyond "Light It Up Blue" (and white)

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 points out the increasing diversity of the autism community, as well as highlights how difficult it is to answer the question "what causes autism?"  Traditionally, autism has been a "white male" diagnosis.  This has sidelined people of color, as well as women and gender minorities.  Turns out that's not at all representative of the autistic population, and a lot of people got left out of the discussion when psychologists wrote the diagnostic criteria.

That includes me, as it happens.  The specter of Kannerian autism still looms large in some circles, and given that my original diagnosis was "Asperger's Syndrome" not "autism," I don't count. That's the icing on the "you were born female and also female autistics don't exist" cake.  There's even one particular researcher that insists autism is caused by an overabundance of testosterone, basically saying all autistic people are male-brained.  

Clearly, the assumptions for who's autistic and who's invited to the discussion table about autism needs to change.  I'm sorry to say that in my adult autistic social group, there's only one person of color amongst the dozen people that attend on a regular basis.  There are at least two gender minorities, and a few born-female autistic people, at least.  

There's one other point to make about this article.  While we don't know what causes people to be autistic (and we may never find out), the research has pointed to a number of factors: everything from air pollution to genetics to oddities during pregnancy.  While it's possible that it's a matter of "minorities' unusual behavior sticks out more, therefore more diagnoses," I suspect the matter is far more systemic in nature.  

It takes time, you see, for knowledge and information about autism to make its way to the majority of the public, from the hallowed halls of lofty academia.  Time is required for insurance companies to be persuaded that autism is a real thing that needs coverage and services.  And most of all, it takes time for the government to shift its unwieldy gears of bureaucracy to serve the needs of its people.  

Black and Hispanic people, on average, have fewer financial assets, education, and social supports to fall back on, compared to the white majority.  So it would be no surprise to me that despite the claims by the researchers here, the vast majority of the difference here is simply an increase in knowledge of autism and what services are available.  Mostly, though, it doesn't seem like they took poverty into account.  

Poverty affects your diet (poor nutrition can easily exacerbate mental illness and interfere with your ability to learn social skills), your educational options (less advantaged schooling limits your ability to learn all kinds of skills, never mind regular school subjects), and your mental health and stability (broken homes take energy away from school and emotional development).  The definition of autism being as broad as it is, it's opened the door for a lot of people that might otherwise have never been able to afford that help.  

The autism community, I think, will be better for their inclusion.  I just hope, in this age of domestic terrorism and prancing white supremacists, that we can manage to listen to our people of color rather than sidelining them.  

(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, September 13, 2019

Histamines: Taking the Misery Out of Exercise

About a month ago, I experimented with flooding my system with histamines to see if it would trigger any ill effects.  I did this via food intake, custom-tailoring a day's meals to add external histamines to my system.  The results were not spectacular, but they did have promise.  I experienced worse than usual brain fog, lack of focus, a burning in my stomach lining, and some trouble breathing.

As it turns out, overloading my system with histamines wasn't actually the best experiment I could have tried, because the results were simply in degrees of discomfort.  A better experiment would have been to remove them entirely from my system and observe the results, particularly during hard exercise.  So I did that!

The Exercise Experiment

The one thing I didn't really try during this food overload experiment (quite possibly because I felt too poorly to consider it) was exercise.  I made a note to try the exercise later, but didn't really set up a good experiment for it until just recently.

As it turns out, as much as vitamin C is excellent for you and a good day-to-day solution, a good over-the-counter anti-histamine is more rigorous and quick to take effect.  Your basic allergy medicine, in fact, will handle this, though naturally you shouldn't be taking allergy medicine every day unless you actually have allergies and can't manage them without it.  So, knowing the effects were likely to be obvious, I took a single store-brand Benadryl, gave it 15 minutes, and then went biking as hard as I could.

I went for half an hour, and pushed myself hard.  Sustained cardio exercise at moderate-to-high intensity has reliably made me miserable in a hurry, so even though I was opting for an exercise that allowed for breaks, I figured I could just keep pedaling rather than taking my usual breaks for breathing.  The area I live in doesn't have all that much by way of hills, but it didn't matter, because...

The results were about as telling as I could have wished.  I got tired, and had to work very hard... but I did not get miserable.  Histamines, apparently, had been choking me out of my oxygen and proper brain function.  It was extremely strange to be working my body so hard without becoming mentally exhausted and depressed.

The bane of my existence has always been exercise, and it's because, to the best of my knowledge, I run short of oxygen very fast and spend the rest of the time simply trying to survive the exercise with enough oxygen to not fall over or stop.  I had a summer cold a couple months ago and experienced the same symptoms (misery and low oxygen intake) from simply sitting, so it was easier for me to recognize the second time around.

The Histamines' Source

So if it wasn't what I was eating (I'd established in the last experiment that I mostly avoid all the foods that are high-histamine), why was my system overloaded with histamines?  

The answer appears to be (at least) twofold.

This is the pond out my back door.  All the snot-colored splotches in the water are algae.  They're some type of toxic species that happily grows in all the fertilizer runoff from the condos on my side of the pond and the apartments on the other side.  Normally they treat the pond for this mess, but after July was over, they kind of stopped, and this is the result.  I have a very high quality furnace filter cleaning the spores out of my house's air, but it's not like the house is airtight.  I may set up an air purifier in the bedroom as well, since I spend a third of my day in there.

The "this is definitely a problem" experience that makes me sure this is part of the problem happened when I went out to get pictures of this algae once.  I was out there for maybe two minutes, in the hot summer sun, last year... After I got back inside I had to lie down for like three hours because I felt so bad.  It was like my brain function had been repressed, almost like being extremely drunk, except without the visual impairments, coordination impairments, and nausea.  I had enough presence of mind to take my N-Acetyl-Cysteine, which helps detoxify my system, and drink a ton of water to help flush things out, and then I simply lay down, closed my eyes, and waited it out.

I woke feeling a little better, but not really back to normal, and with a much healthier respect for the toxic sludge that lives outside my back door...  Even opening the back door for a couple seconds has deleterious effects on my brain, though thankfully not the "go lie down for three hours" effects.  More like "you're going to feel kind of bad for 15 minutes."

So, I'm pretty sure the algae is factor one.  Factor two?  House dust mites.

My mother is allergic to these, which is fortunate because otherwise I probably wouldn't have attached any importance to the fact that my nose starts plugging up when I lie on bedding that hasn't been washed in a week.  She actually has it much worse, in that she actually can't sleep if the mites are bad.  Her nose just keeps running and stuffing.

I mentioned this to my doctor, and she recommended washing my bedding in hot water.  The problem is that hot water shrinks things, and I don't really like fighting my spouse for blanket.  Fortunately, my mother has a solution:

More the former than the latter, but if the former doesn't entirely fix the problem, the latter might.  Or might just help with the algae also.  I've ordered a bottle of the deMite, and will try it next laundry day.

A Healthier Life?

I'm really hoping those are the only two factors, and that good care with both of these factors will sort the problem out.  If it does, I'll be able to exercise more regularly, and at higher intensities than I've ever been able to before.  I've been reluctant to exercise... well, at all, really.  But especially at moderate to high intensities, because... misery.  If you're miserable every moment you're doing something, you tend not to repeat that activity.

I still have the years of misery associated with exercise, of course... but I'm not going to let that stop me.  Movement is immensely important to mental, physical, and emotional health.  If I can incorporate it in my life without the historically destructive, all-consuming misery, that would be a massive improvement... and it might make all the difference.  I might actually come to like exercise.  (Given my past history, this last sentence would normally equate to "pigs might fly."  The future might be different, though!)

In the meantime, I need to manage my daily histamine levels.  This often means careful diet management, but in my case, I basically don't eat anything that's high in histamines anyway.  I need merely cut a couple foods that I wasn't extremely fond of anyway.  My doctor has recommended an herbal supplement that should help with the day-to-day management of this histamine overload.

Notably high in vitamin C, of course, but the various herbs listed there also help with histamine management.
In the meantime, further experiments with vitamin C are in order!  I've had promising results with drinking a dose of my vitamin C powder about 30 minutes prior to biking.  But biking is just the easiest option.  If I can, I'd like to experiment with my archnemsis of exercise: jogging.  I have a long history with failing miserably at jogging, and it'd be a real turning point if I could succeed at it and get really good, intensive exercise at the same time.  I'm very hopeful!

Wednesday, September 11, 2019

Legwork and Life, week of 9/11/19

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.

Whew... September is busy.  I managed all my preliminary reviews for the government work, but in about a week, I'm going to have to go over those reviews again and rewrite and reconsider them.  In the meantime, I've been asked to read a fiction book and review it... which... you would think wouldn't be so different than what I already do for this blog.

But there's actually a major difference between reviewing a book for factual accuracy and reviewing a book for entertainment purposes.  In a factual book, you evaluate the facts first, and the presentation of the facts second.  In a fiction book, you evaluate the story and the believability of the world and the characters.  The former is more objective, the latter more subjective.  

I feel... a bit out of my depth, to be honest.  I shouldn't; I did the latter kind of work in school on a regular basis.  I guess anything subjective is... subjective.  I like solid, yes-or-no questions better than I like "the main character was highly believable, but personally I think if the world changed in X way, you wouldn't see people in general doing Y."  Or... something.  I don't know, maybe I'm even rustier than I thought.  Maybe I can do research on how one writes a book review on fiction books...  

Happier news:  I had a great breakthrough regarding the histamine issue!  I'll detail it this Friday, so look forward to that.  I'm really excited.  

Also happy news, this happened:

This is fancy ramen.  A friend of mine had some unexpected life complications and ran a bit short on money, so I hired them to make me... well, basically a meal kit of fancy ramen.  They found and prepared a lot of fresh veggies, including turnips, shiitake mushrooms, scallions, and bamboo shoots.  They marinated the soft boiled egg in seasonings.  They even toasted and seasoned bok choy leaves for a crispy topper.  Also, and perhaps most importantly, they made bone broth.  Like, the kind you have to boil for like 48 hours straight with tons of seasonings and spices.  

I've never had bone broth, and didn't really ever think I would, because I'm picky about my animal products, and very few restaurants care about serving humane products.  I provided my friend with humane meaty bones from a local farm, and they added some veggies and other seasonings to make this broth.  The end result was highly delicious, and there's plenty left even after serving myself and my spouse.  

There's so much broth left that I think even after the other ingredients are gone, I'll be able to make broth cubes and throw them into all sorts of recipes.  My mother did this, too.  You pour the broth into an ice cube tray, making frozen cubes of broth.  These store easily and can be thawed out whenever you need some flavor.  Even a single one of these cubes could seriously spice up pretty much any dish.  

Basically, my friend did an amazing job and the results will brighten my meals for a good while.  

Monday, September 9, 2019

Reading the Research: What Happens When We Grow Up?

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 the question most parents of autistic children ask themselves as they notice their kid growing up.  Or, I suppose, it's the best answer we have at the moment.  

I participate in a social group for more middle-aged autistic people.  Of the people there (ages 30s to late 40s), I get the sense that most of them do not lightly share their diagnoses.  The stigma is real, especially in the field of employment.  Those of us that hold regular jobs don't seem to openly live as autistic adults, for the most part.  

I can confirm that there is little to no incentive to live openly, and that services for autistic adults are obtained at the cost of a lot of time and frustration.  The process is somewhat similar to pulling teeth while jumping through circus hoops, and requires you live below a certain income threshold to qualify for Medicaid (or, if you're very fortunate in your life circumstances, pay exorbitant amounts of money out of pocket).  I've heard quite a bit on the Medicaid route from the parents I talk to at the local meetings in the area, and while there are definitely success stories, the path to that success is... daunting.  And full of road blocks.

Even assuming you have the money to throw at services, it's not a sure thing that you'll find the right kind of support.  I fall into the "very fortunate" category above, though mostly my services fall under "give me the tools to help myself" rather than "I need other people to help me live my best life."  As I age, I'm sure that will change.  Especially if I don't lose weight and continue to hold a desk job, mobility difficulties are likely, and with that, a reduction in independence and employability.

With my parents' support and assistance, I've been able to secure the services of my doctor (generally when I say "my doctor" I mean this doctor, not my primary care physician)... who wears many hats, as therapist, nutritionist, general health and life coach, and neurofeedback practitioner.  When I went looking for a therapist, years ago, I found her and decided to give her a try... and got immensely lucky.  She and I have developed a pretty good relationship, which is essential for successful therapy.  That she has so much experience in so many fields just made it more like one-stop-shopping, rather than needing to tie together and communicate with a whole team of professionals.  It can take years to find a good therapist that you can work with, hence "immensely lucky."

All this to say, I suppose, that being an adult autistic person is hard.  It carries challenges with it, and our struggles are stigmatized in overall US culture.  I talk about having a therapist openly (at least among friends), because it normalizes that fact, but when I most needed one, I absolutely wouldn't have, because it flies in the face of the social norm of self-reliance.  It might be considered a weakness, a failing on my part as an adult.  For an adult already struggling with depression, anxiety, and employment, having that additional pressure was unthinkable.  

Which is why, I guess, I'm not overly surprised to hear Mr. Robison's informal study received a lot of negative responses from the autism community.  Personally, I would be inclined to respond otherwise... but only because I'm sufficiently stable and confident of who I am.  I can only live openly as I do because of that stability, and no one has the right to demand that openness from me.  Because there absolutely is a stigma.  Sometimes, when I disclose, I get weird looks, or people politely avoid me, or close doors to opportunities.  Once, I got a barrage of stories about every bad experience that person had with autistic people in his life of work.  It was... really disheartening.  

I choose to live openly because there are small children with autism growing up, and they need to know they aren't alone. And because there are parents that are trying their hardest to do right by their kids, but have so many questions and misconceptions that the task feels Sisyphean.  And so, I'd participate in such a study, if it was offered... but I am in the minority.  And I'll continue to be, until things change.  

(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, September 6, 2019

Book Review: Going Over the Edge?

Life with a Partner or Spouse with Asperger Syndrome: Going over the Edge? by Kathy J. Marshack, is a book on handling relationship difficulties when one partner is autistic.  It's written by a therapist with personal experience in autism.  She's nonspecific, to protect privacy, but my guess is that in addition to having an autistic mother, she also married and then divorced an autistic man.  I'll just be very polite and say, "it shows."

I try not to look up reviews by others before I read and review a book myself, because it tends to bias my understanding of the book and the author.  This particular book made me very angry within the first couple chapters, though.  I mentioned this to a friend, and he looked up the reviews... apparently a lot of autistic people got angry about this book.

I did find some redeemable points about it, though, so I'm still going to review it.  It's just going to get a more critical treatment than most of what I read, because there were some very serious issues.

First and foremost, the author.  I mentioned her background with autistic family members.  This book seems like something the author wrote as part of her personal therapy.  It's very raw and painful at points, something like Lament for a Son, except destructive towards autistic people in parts, and written from a place of authority (PhD/therapist/marriage counselor).

The combination is rather horrifying to me.  Lament for a Son is an excellent book, written by a grieving father who claims no particular understanding of life and death.  As a marriage counselor and earner of a PhD, though, the author sits in the position of authority for the majority of this book... which, given what I'll mention next... is kind of hackles-raising.

The biggest point of contention I have with this book and its author is that, while sitting in that position of authority, they refer to autistic people as broken, and seem to imply that the autism is the failure point of these relationships.  Things like "being incapable of empathy."  (Easy example on page 20: "But what all those with Asperger's seem to have in common is the effect they have on their loved ones.  Because they are not able to empathize, they often leave us feeling alone or crazy...")

Not able to empathize.  Not able?  Being autistic does not mean you lack empathy.  In fact, quite the opposite.  Nor does being neurotypical mean you're perfect at communication and have healthy expectations for people and relationships.

I've been told by a former roommate from college that she'd assumed I had no empathy, presumably because she'd been told that absurd factoid elsewhere.  She never questioned it until years later.  She didn't question it when I bought Easter candy and hid it around her room in a little Easter egg hunt.  Didn't question it when I made time to listen to her when she was upset or wanted company.  Didn't even question it when I put together music from her home church to go with her on a longer trip overseas, to help fight the homesickness while she was gone.

It was only years later, when it came up in conversation, because this kind of thing is my work, that she realized the assumption and told me about it.  It was, frankly, really hurtful.  It's been battered into me, while growing up, that I'm a wrong and terrible and broken, not simply "different."  This friend is not a stupid person, and has plenty of empathy herself.  But she'd been fed that assumption and never thought to question it.  So to her, I was broken.

Needless to say, I hope, it makes me alllll kinds of white-hot furious to see that embittered, heartless, flatly wrong assumption parroted again, here, from a place of a marital counselor with a PhD.  If my copy wasn't a library book, I would have burned it on the spot for that vicious cruelty alone.

Once and for all, people: Autistic people have empathy.  We think and behave differently than the norm, which can mean we don't recognize a situation where empathy is appropriate, or which actions are desired upon recognizing situation that would merit an action.  The safest move, when not knowing what to do, is usually to do nothing.  An autistic person may also miss that a situation is upsetting to a neurotypical person, and thus be blindsided by requests for comfort, help, or a change in behavior (or in this book's case, the lack of requests, which grows into relationship problems...).

Second point: relationships are hard.  You don't need autism in the mix to have massive communication failures.  Half of all marriages in the US end in divorce.  Half.  That is far too many for it to be "autism ruins everything."  For all this book's insistence that neurotypical norms and expectations are reasonable (and autistic ones aren't?), they often aren't reasonable at all.  If they were, the divorce rate wouldn't be so high.  The author may specialize in marriage counseling for people with autism or married to someone with autism, but at least in this book, they place far too high a value on normalcy.  Sometimes personalities clash.  Sometimes expectations shift.  Sometimes situations change.  And sometimes, people can't reconcile those changes.  That's life.

Before I married my spouse, we had some serious talks about lifetime type issues.  Kids, chores, balance of responsibilities, etc.  We had pre-marital counseling.  We had fights about things, from important stuff like "who does what chores when and how often" to "does the toilet seat stay up or stay down?"  I'm autistic.  I have trouble communicating.  That makes this whole relationship thing harder.  I try to help counter it by laying out my expectations and trying to hear his expectations.  Talking about our differences.  Putting our compromises on paper, and then trying to stick to them.

Y'know who apparently didn't do this?  The main example people, "Helen" (NT wife) and "Grant" (autistic husband).  The author goes on and on about Grant's controlling personality, his preoccupation with work, and the painful situations that result.  Not so much in focus?  Helen's self-martyrization and apparent inability to tell her spouse what she wants from him.  She can tell her therapist just fine, right up to and including "isn't it so crazy that he doesn't just do this already?"  But apparently it would be beyond the pale to actually, I don't know, use those vaunted neurotypical communication skills to communicate those things?

I'm extremely unimpressed with either of them.  Helen needs to quit running herself ragged, making excuses for her spouse, acting the martyr, and staying quiet about what things she needs from Grant, emotionally.  Grant needs to detach from work to spend time with his family, learn a bit about neurotypical-handling, take his spouse and her concerns seriously, and learn more appropriate behaviors in the various situations he fails at in this book.  This morass of a situation described in this book doesn't need to happen, and certainly doesn't need to continue.

Third point: the book counsels "detachment" as an answer to relationship problems with an autistic spouse.  Detachment: distancing yourself from the situation and your spouse.

Y'know what that is?  It's the Fourth Horseman of Broken Relationships.  Seriously, I cannot stress enough that you should not do this unless you see zero hope for success in the relationship.

I read the whole book, and the author seems to slowly redefines "detachment" as "not taking your spouse's autism-related failings/behaviors personally" and "redefining your expectations for your partner and yourself."  That is not how English works, and it strikes me as a very dangerous path to take.  Especially, as mentioned, when speaking as a marital counselor.

There's a chapter on sex, too, which of course places autism as the point of failure when a NT spouse feels unfulfilled, unromanced, etc.  Let's talk about this for a moment.

Popular culture has a lot of messages for us about how sex should be.  The focus is pretty much always on penis-haver.  As the owner of female parts, I learned basically nothing about them, what to do with them, or how to experience pleasure with them.  To be blunt and uncouth, pop culture, sex ed class, and porn instructed me that my parts are only for being a cocksleeve, and my sexual pleasure is irrelevant.

Is it any wonder, then, that couples have so much trouble with mutually-satisfying sex?  This isn't an autism thing, it's a cultural thing.  We're so uncomfortable talking about and portraying sex, that all you get are bare bones details unless you do some serious searching online and get lucky enough to find some of my generation's work on it.

This is all massively unhelpful for any relationship.  There's a huge industry around satisfying unfulfilled lovers with either anatomy, with everything from sex toys to self-help books to making infidelity faster and easier than ever before.

When it comes down to it, what you actually need is for people to talk about their preferences in sex and intimacy, and be willing to try new things.  I have a friend (who is married to another vagina-haver), who tells me they pity straight couples.  In gay and lesbian relationships, there aren't so many norms, and it's basically required that you talk about what kinds of sex, touch, and intimacy you like.  Straight couples don't do that nearly as much, if at all, and the results of poor communication are... well, predictable.

In the end, everyone should talk about these things with their spouses.  Everyone should figure out what they like and don't, and give directions and follow directions.  Autistic people just need more directions than most.

The book seems to have an undercurrent of "I can't believe autistic people can't see all these signals we put out" even though it's stated repeatedly, that this is the truth.  It's as if the author can't entirely believe it herself.  It's also as if the author, despite being a marriage counselor, doesn't understand that even if the signals are put out, they aren't necessarily read correctly or at all by a neurotypical spouse, either.  Frankly, it boggles my mind.  If y'all were the magical thought-reading genius-psychics this book seems to imply is normal, there wouldn't be so many divorces between purely NT partners.

Two quick notes before I move on.  First, this book has a section subtitled "Can you be NT in an Aspie World?"  This is an absurdity.  There is no Aspie world.  We are essentially aliens, strangers in a strange land.  There are only pockets in the vast NT world where autistic people may sometimes find respite to be ourselves.  Neurotypical people are the vast majority, and they shaped the world we live in.  Playing the victim because things aren't exactly as you'd like them is worse than wrong, it's abusive.  Like we don't have enough to deal with.

Second, there's a small incident with a fictitious Justine (NT) and Edwin (autistic) having a minor argument.  Justine says to Edwin, "You think other people should think like you, don't you?"  He responds in the positive, and the book says, "As long as Edwin has that point of view, there is no reason for Justine to argue another view.  She will lose."

I hate to shatter anyone's beautiful illusions here, but "assuming other people think like you and that your way of thinking is best" is literally the default human state.  That isn't an autistic thing.  It's a people thing.  What makes autistic people have so much more trouble with it is that we're so very different that it's much more of a stretch to imagine a "normal" viewpoint, transitioning between points of view can be difficult, and we're sometimes prone to black-and-white thinking.

I've been pretty critical of this book thus far, and fairly so, in my opinion.  But I'd be doing a disservice to the book and its author if I didn't point out that it gets some of its stuff right.  In general, the "Lessons Learned" bullet point section at the end of each chapter has the broad therapeutic brushstrokes correct.

Things like "seek professional help from someone qualified," "if your partner doesn't understand you, stop and explain yourself in simple and concrete details," and "don't be offended if they miss your cues.  Be explicit.  Use words to explain your emotional state and your needs and wants..."  The ugly accusations, like the supposed lack of empathy, supposed abusive tendencies, and blaming the autistic person or the autism itself for everything going wrong in a relationship, usually don't make it into these.  Usually.

This book is perhaps a good example of how marriages can go very wrong when autistic people are involved.  As a practicing marriage counselor, the author has seen lots of those, and the example couples seem more or less realistic.  In that capacity, it has value, and if your marriage woes resemble any of the examples' woes, then perhaps the book might be helpful.  If you can somehow shrug off all the other things I've complained about.

Read This Book If

I try really hard to find redeemable points in a book, and if I find none, I don't write a review for it.  This book came to the bleeding edge of that limit.

I can see this book having value for someone who is very like the author, who I'm guessing resembles her fictitious "Helen" in a lot more ways than she say directly.  People with an autistic spouse, prone to internalizing their marriage woes, rather than talking about them with their spouses, professionals, or even friends and family.  People prone to valuing the appearance of happiness, and sacrificing themselves and their needs and wants on the altar of self-martyrdom rather than admit that something's wrong and seek solutions.

For anyone else... find something else to read.

This book outright calls autistic people broken and incapable of empathy.  It seems to fight with itself as to whether we're the villains or to be pitied and helped.  Frankly, it reads like the author wants to have her cake and eat it too.  She still seems to have lot of feelings about her divorce and her autistic mother that, I would say, she put into her writing here.  But in this book, she writes as the authority, the therapist, the PhD, the person in the place of power and knowledge.  And while she does so, her bitterness poisons and twists the narrative and even the therapeutic recommendations, destroying any good the book might have offered couples in need of help.  Find something else to read.  

Wednesday, September 4, 2019

Legwork and Life, week of 9/4/19

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.

I had a weird occurrence this last week.  Usually my mood weather is mostly cloudy (lightly depressed), with occasional forays into cloudy (depressed) with thunderstorms (angry and depressed).  Sometimes I have a better day and have partly cloudy weather (neutral mood).

This week, I had a moment of emotional overwhelm... which would normally be bad... but it wasn't bad.  It was just overwhelming, so I started leaking tears, but I wasn't angry or sad.  I was sitting outside in the sunshine, on a nice day, with blue sky and puffy clouds.  I mentally puzzled over it for a while, and decided that I was apparently experiencing joy.  It was quite odd, because there was no actual pleasure or happy sensation, just the overwhelm.  And the timing was extremely peculiar, because it was the first day of my period at the time, which usually makes me more miserable than usual.

My mental math was informed by a pair of Invisibilia episodes on emotions, which told me that apparently the sum total of human emotion can be plotted on two linear spectrums: wound up-calm, and pleasant-unpleasant.  I ruled out the experience being unpleasant because the situation was pleasant, even if the overwhelm feeling wasn't really pleasant.  Obviously the feeling was off the charts on the "wound up" side of things.  In lieu of any other data, I picked "joy" because it was the most powerful "pleasant" feeling I could think of, and one that appropriately does sometimes move people to tears.

As is my tendency when odd things happen, I tried to pick apart the experience.  Sunshine on my skin in small doses is a pleasant sensation; it's why I was outside in the first place.  Perhaps the vitamin D was particularly essential?  Or the remnants of the maca root managed to rebalance my hormones for a short time.  Why didn't I feel the joy properly?  Perhaps my brain is improperly wired for such positive experiences, after two decades or so of depression?  Or perhaps the painkillers had some effect- positive or negative.  The type I was on, a Midol-knockoff specifically for period pain, contain antihistamines.

When I mentioned this to my doctor/therapist, she noted that it can be very easy for anxiety- and depression-prone people to mistake good emotions for bad ones, so she was very pleased I'd noted the difference here.  An easy example is excitement and anxiety.  Excitement is being wound up over something good, looking forward to it.  Anxiety is being wound up over something bad, dreading it.  If you're very accustomed to feeling anxiety, it can be easy to mistake excitement related to say, your upcoming graduation, or birthday, for anxiety.

She suggested this phenomenon might be more common in my life than I think.  I'm actually kind of dubious, since I did recognize the weirdness of the pseudo-joy, and in general feel like I have a good handle on my emotions.  But it won't hurt me to keep an eye out.  

Monday, September 2, 2019

Reading the Research: Reading Implicit Attitudes

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

Today's article discusses implicit attitudes and how they affect impressions and relationships.  This is kind of interesting, in that it doesn't work the way you would expect or hope it to, and the results can be highly detrimental to any outsider in a group (often, autistic people and our families).  

This also is part of the Hidden Curriculum that autistic people are often not told about, yet are expected to know as well as any neurotypical person.   In this particular case, my guess is that most people follow this rule... but don't particularly notice or realize it.  

This discovery can essentially be summarized as: "In general, and without better knowledge, people think other people deserve how others treat them."  So, if a family with an autistic child attends a family function, but the people around them already know their kid sometimes acts strangely or "misbehaves," they may avoid that family, and others will notice and assume that family is somehow unpleasant, standoffish, or deserving of that avoidance.  Same goes for an autistic employee at a work party, church function, or other gathering.  

Needless to say, I'm not terribly impressed with this particular human heuristic (heuristics are mental shortcuts that we use automatically to save energy and time).  This explains some, though of course not all, of the isolating effect being autistic can land you with.

I've mentioned, I think, that I had no friends worth the title until middle school.  The first person that did actually put in the time to befriend me was a Britishman, who I met online.  We became friends because we had some things in common, but perhaps we also became friends because there were no isolating social signals to be read from others.  He was, so to speak, not turned away before he had a chance to actually meet me.  

This is likely a part why many autistics find their first friends and communities to call home online, rather than in person.  You're judged on what you say, not your skin color, what status symbols you're wearing, how people normally treat you, or even how you speak (or don't speak).  All that information is missing online, and instead people are forced to rely on your ideas and your textual presentation of yourself.  

(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.)