Worth Your Read: Spiky Skillsets

https://theaspergian.com/2019/07/05/autistic-skill-sets/

Let's talk about expectations for a bit.  Humans have this tendency to assume that if someone's really smart, they'll be good at almost anything you put in front of them.  Even though this is demonstrably untrue, this is the assumption. 

For example, I love my father, and he is utterly brilliant in the chemistry lab.  Seriously, if it's in his area of expertise, there's no one better in the world you can ask to solve a problem.  But if you gave him a pile of raw chicken, grains, spices, produce, and other ingredients, took his phone away, and told him to have a dinner with side dishes and salad all ready to go at a certain time, he would likely not manage that deadline.  My mother, on the other hand, accomplished that every evening for like 20 years when my brother and I were growing up.  This is an example of skill sets.

Now, most peoples' skillsets are at least reasonably well-rounded.  Because of the educational system, you can generally assume any given person you run into can do basic arithmetic, read, write, make small talk, and understand the basics of science, history, and computers.  Oddly enough, I live in an area where the census of 1990 told us that 19,000 local adults are functionally illiterate, and can't read menus, medicine bottles, and children's books. 

If you're lacking in any of those categories above, you would be considered disabled, especially if your level of proficiency was nonexistent.  In today's world, it's simply expected that you know these things and can perform them.  If you're unable to meet these expectations, your opportunities are far fewer. 

Now add a diagnosis into the picture.  Autism spans a particularly wide spectrum of difficulties, differences, and oddities.  Any given autistic person will have different challenges, so the word itself is almost meaningless.  The thing is, autism lends itself to even more weirdness in expectations. 

You can have highly intelligent people succeeding brilliantly in academia, but the instant they leave, they find out they can't hold a regular 40 hour a week job.  Because for all their brilliance in research or writing papers, they can't handle networking, juggling others' feelings, social dynamics, or personal care skills.  This is an example of a person with a spiky skillset.  Highly skilled in some areas, painfully poor in others.  Yet when the average person looks at them, they'll make an assumption about the rest of the person's skills by whatever skill is on display.

If what's on display is "mediocre conversational and self-care skills" this example intelligent person will be considered disabled, and concern may be expressed about whether they have sufficient supports, or whether they should hold any kind of job at all.  If their favored research subject is being discussed, the autistic person will seem like a genius, a person going places in the world, and it will be assumed they have self-care skills to match their intelligence and devotion to their favored subject. 

Both assumptions are wrong, and the truth is somewhere in between.  The example brilliant-researcher-autistic person may well be going places, but their lack of self-care and conversational skills does disable them and will hamper their ability to succeed.  This is the spiky skills this article talks about, and it's a common experience for many autistic people.

Here's a poem about exactly this phenomenon, and a comic that includes several panels on the subject.

All this isn't to say that autistic skillsets have to be spiky.  Just because a person's skillset developed that way doesn't mean they can't improve and grow their skillset.  An autistic person can learn various personal care skills, and with time, learn conversational skills as well (case in point, me).  A supportive environment, thoughtful help, and plenty of patience are instrumental in making this possible. 

A final note: the focus can't all be on autistic people changing to suit others, though.  Others need to adapt to help us, too.  

Legwork and Life, week of 8/28/19

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.

My bicycle works!  While the good weather lasts, I'm going to try to bike instead of drive for short trips, like when I take library books back, or when visiting my parents.  This has actually come up time and time again in my research queues as a major life improvement.  I don't have a whole lot of places I normally go within biking distance, but on the other hand, even a little bit helps.

I picked up a cargo rack, so I could also do small amounts of grocery shopping at the local "fresh produce, flowers, specialty foods, and etc" store.  Even without the rack, I can still make the trip, but I'm limited to whatever I can carry on my back.  It also has the distinct danger of getting squished, which, if it's fresh fruit, really isn't optimal.  Having a container bungie-corded to a cargo rack would potentially solve that problem, especially if the container was padded.  

At any rate, I dosed myself up with vitamin C and biked off to my parents' a couple days ago.  I'm not sure I let it absorb long enough before doing the trip, to be honest.  I think it was only like 5-10 minutes before I started off, and I got pretty huffy, grumpy, and red in the face.  I think next time I should give it an hour, which was what my doctor suggested in the first place...

The whole high-histamine theory seems so probable and so promising for my exercise woes, to be honest.  I really want to give it the best possible shot, to see if it's right.  The trip not seeming any different was a little bit of a setback to me, but admittedly, I hadn't eaten, and I likely hadn't given the vitamin C long enough to absorb in...  So I'm not going to give up on it yet.  I do wish I had clearer evidence.  Anyone would, I think.  I hate all this guesswork and trying things one at a time and hoping for clear results.  

Speaking of adverse reactions, the maca root rash still hasn't entirely gone away, so that's on hold until I feel like I've detoxified as much as I'm going to manage.  My period is definitely on the way, and I have no idea if the 10ish days I took the maca are going to affect it.  I'm hoping yes, in a positive way, but with my luck, it'll be probably be "yes, very negatively."  

Nothing terribly exciting on the government grant review end of things yet.  They're still mostly doing preliminary setup, registration, and assignments.  I have my assignments, but haven't looked at them because I'm afraid to find out whether one particular dud of an application is on there.  The jury is out on whether it'd be a good thing if it was, so I could give it the chewing out it deserves, or a bad thing because the application irritates me so much.  

Sadly the applications aren't the only major irritants in my life at the moment.  I'm reading a particular book in hopes of reviewing it for this blog.  It's starting to look like a book I can't honestly recommend to anyone, but I might still review it just to point out how glaringly wrong it is.  

In the meantime, I'm re-learning the value of taking things in small pieces, so I don't have a fury-induced meltdown.  It should be a good and valuable post, assuming I can avoid said meltdown and also maybe being too vicious about my criticism.  

Reading the Research: Is It Actually Autism?

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 makes me shake my head and wonder if parts of academia ever talk the the people they supposedly study.  

The gist of this article is a mix of fact and twisted perspective.  Autism, having moved beyond Kanner's original, highly limiting understanding, is a much less homogeneous diagnosis than it used to be.  If someone walks up to you and tells you they're autistic, you might have expectations or understandings of what that means, but in truth, we're a dizzying rainbow of interests, skill levels, sociability levels, and communication abilities.  If you've met one person with autism, you've met one person with autism.

This is not entirely a good thing, of course, when it comes to research.  You want a whole understanding of the condition so you can study all of it and thus receive data on all of it.  But with a category as broad as autism, where you can have someone highly verbal with lots of self-care skills, like me, and someone completely nonspeaking who may never learn to use a toilet, it can be hard to pin down what you're looking at and how to study it.  I've written on this before, and I expect I will again, since that post is nearly three years old.

Apparently this researcher or team of researchers misses the old days of Kanner's narrow diagnostic criteria, which would have excluded myself and many of the autistic adults I know... even the nonspeaking ones, for being too social and having too many friends.  As if the gradual improvement of not systemically isolating nonspeaking people and socially maladapted people like myself was a bad thing.

I'm not sure what they think the point of a diagnosis is, to be honest.  As far as I know, it's for designating there's a certain difference or disability that's "off-spec."  I've developed my camouflaging skills to the point where you usually can't, on brief inspection, tell I'm autistic... but that does not magically make me not autistic.  It does not make my brain work like everyone else's.  It does not make me respond to noises, social situations, and popular media like everyone else.  

I am, irrevokeably, different.  The word we have for that particular type of difference is autism.  Pining for the old days of Kanner's syndrome isn't going to change that fact.  Neither is pretending the differences don't exist simply because some autistic people have developed socialization skills, or are highly verbal, or aren't completely overwhelmed and withdrawn from society.  

Postulating that autism doesn't exist merely because you aren't staring myopically at the most extreme end of the spectrum is absurd, and I challenge anyone who is entertaining that idea to come talk to me, or to any other autistic person willing to communicate on the subject.  My contact information is on this blog.

Lastly, the article has the temerity to complain that no major discoveries have happened in the field of autism in the last decade.  The implication being, of course, that this is because the research is focused on too broad a category of people.  I expect a lot of research teams would disagree with this assessment of recent research, but quite frankly, I don't particularly disagree.  

That's because most researchers are looking in the wrong places, in my opinion.  They're using mouse models (which are the semi-ethical stand-in for human subjects) rather than looking at human data.  They're fiddling in genetics when it's been abundantly clear that autism isn't fully explained by genes.  The answer, I think, is found in the brain, and its connections.  

I have personal experience to back that opinion.  I started LENS (Low Energy Neurofeedback System) about four years ago, after getting out of college and failing out of various jobs.  Under my doctor's care, and with the LENS prodding at my brain connections, I've made such improvements as "learning to smile at cameras and people predictably," "becoming less depressed on a day-to-day basis," and "managing a long distance relationship, which turned into a regular relationship, and then a marriage."  

I can also point to John Elder Robison's experience with TMS (another form of brain stimulation), which he wrote a book about and I reviewed.  I am certainly not a researcher, but I think anecdotal evidence serves a purpose.  If nothing else, it points to what avenues might be worth exploring.  I just hope these parts academia can catch up, rather than dragging their collective heels and wishing for the unenlightened past, where people like me were institutionalized with other diagnoses rather than given supports and helped to build lives for ourselves.

(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn't get a whole Reading the Research article about them.)

Book Review: Reframe Your Thinking Around Autism

Reframe You Thinking Around Autism: How the Polyvagel Theory and Brain Plasticity Help Us Make Sense of Autism, by Holly Bridges, is a very short (100 page) explanation of a new theory about autism.  It features easy-to-digest language, small doodle-like pictures for illustration, and small quotations/poetry interspersed throughout.

For a book devoted to explaining a scientific theory, it's remarkably readable.  It's meant to be, of course.  The entire point of the book is to explain, in layperson's terms, how a scientific theory (Polyvagel Theory) and a specific type of therapy (Anat Baniel Method) combine to form a complete understanding of autism and a path forward to helping an autistic person learn to thrive.  It's an explanation that doesn't rely on specific genetic markers, air pollution, or really any single "cause" for autism.  But it does offer paths forward for autistic people and their families.

I won't summarize the theory here, as that's the whole point of the book and it does it better than I would, but I do think the theory has merit.  I'm not 100% sure it applies to every single person on the spectrum, but it very well could.  In particular, I found the explanation meshed well with some descriptions in "my life with autism" books I've read, such as The Reason I Jump and Knowing Why.  It could even explain John Elder Robison's experience in Switched On.  In truth, my own improvements with LENS might be explained by this theory.

I don't have any major "yes, this is exactly right!" experiences that go with this book and the theory it espouses, but as I'm considered "better at camouflage," or "high functioning" (ugh), it might be safe to say I'd be less affected by the systemic interference the theory suggests is the real reason for autistic behavior.  Or I might just be being characteristically dense and missing something that'd be obvious to someone more acquainted with the theory.  It's very much a fish in water being asked what "wet" feels like, in some cases.

The book has an interesting take on the whole "autistic people rub neurotypical people the wrong way" phenomenon, which I appreciated.  I tend to have a very negative way of thinking about the whole thing, but the author wasn't quite so cynical, and it helps to see the interaction in multiple ways.  So that's a highlight I found useful. 

It wasn't a perfect book.  I'm not sure I've yet read a book I didn't have at least some minor disagreement with.  The author makes generalizations about autistic people and our development and preferences that I can pretty much guarantee aren't going to be true 100% of the time.  It's just a matter of people being all different, even within a single category ("autistic people," "black people," "Australian people").

I was also thrown for a loop by the use of the word "autist" for "autistic person" but the author's Australian, so that may just be the lingo there.  It's not particularly offensive, I just wasn't particularly expecting it, so it stuck out.

Read This Book If

You want to understand the autism spectrum better, and have a possible explanation and a way forward for yourself or your autistic loved one.  This book strikes me as particularly insightful in terms of "lower functioning" autistic people, particularly ones with motor and sensory difficulties, but in all honesty, it may well apply to any and all of us.  Including me.  As such, parents, teachers, educators, professionals, and especially fellow autistics, might find this book and its theory edifying.  

Legwork and Life, week of 8/21/19

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.

The itching has thankfully subsided.  This is, naturally, because my doctor told me to stop taking the maca root.  I'm a little frustrated that the rash site doesn't seem to have returned to normal, but perhaps the supplement isn't quite flushed out of my system yet.  Either way, I'm going to give it a bit longer and then try it again, at a very low dose.  Chances are, the same result will ensue.  But on the off-chance it doesn't, I'm going to try, because I'd really like this to work.

We did finally get the bed moved away from the wall with the smart electricity meter.  I seem to be sleeping better!  We're not actually clear whether that's because the bed is now facing away from the curtained window, or because the electrical meter actually is a garbage machine that disrupts sleep... but either way, I'm really pleased.  I'm not as tired in the morning, and when I am tired, so far it's because I deserved it for staying up late.  

This change of bed location is in addition to keeping the wifi turned off at night, and having our phones/tablets/etc. in airplane mode at night, with wifi and cell phone data turned off.  I'm honestly considering just paying for more data per month and ditching the wifi router entirely... but again, that's a major change, and would need to be made with my spouse.  

I also managed to get myself and my bike to a different repair shop.  This one didn't try to sell me a new part... the repairman actually just fiddled with a few things (tension in my brakes and the gears, or something) and the gears stopped slipping.  So as far as I'm concerned, they're magic now.  They kept the bike a couple days to try to fix the barking sound it was making when it was pedaled, and they did manage that as well.  So now I have a working bike and just need to have a non-rainy morning or afternoon. 

In the meantime I've been noticing I get red in the face and such at relatively light exertion, which I feel like has been a thing for me growing up, but maybe not quite to this degree.  I'm not really eating a lot of high histamine foods, or even all that many histamine liberators... so it really makes me wonder about the algae outside.  The board has been kicking around the idea of simply filling in the pond out back, which would be far cheaper than fixing it ($45k versus $150k, or something like that).  I'm kind of on the fence about it, to be honest.  The algae is really horrible and bad for me, but I also really like having a pond and seeing the great blue heron and the ducks.  If the pond goes, so do they.  

Anyway, I'll be able to try the bike trials with and without the vitamin C as soon as I get a nice few hours.  It's been rainy and thunderstormy recently, so I haven't gotten my bike out yet.  Soon, hopefully!

Last news: it looks like I'm being called on again to review research proposals for the federal government.  I'm really happy it's not falling around Thanksgiving or Christmas this year.  It should be next month, which makes these next 30 days or so Crunch Time.  Lots of deadlines, lots of hurry-up-and-get-it-done.  I was just starting to manage getting a buffer together, too...  But this is also important, so I guess I'll do the best I can on both fronts and hope I don't drown in work.  Wish me luck!

Reading the Research: Child-Directed Therapy

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

Today's article comes to us from the general morass of autism therapies, where everything sounds like it might help, but costs tons of money to try and as a bonus, might also harm your child.  I don't envy parents needing to sift through this morass, but I'm happy to try to help point them in the right direction.  

The autism community has definite opinions about ABA. (Yes, every single word in that sentence is a different link.  No, you don't have to read them all.)  When done right, ABA can be a helpful tool in helping an autistic person learn to communicate.  Unfortunately, it's mostly not done right.  All too often, ABA is used to force autistic people to adhere to some imagined standard of normalcy, punishing their uniqueness until they are too afraid and beaten to be themselves.  This includes the place I worked at for a time, I'm sorry to say.  

The things that are good from ABA all appear to be in this twist on ABA: Pivotal Response Treatment, or PRT.  Basically, this therapy starts with overall goals, like "increasing communication skills" and "rewarding pro-social behavior" and aims for those... but rather than traditional ABA's narrow focus of specific tasks, one at a time, it instead mandates that the child set the stage and have as much choice as possible.  

Far less emphasis is put on "making the person normal" and instead is spent incorporating the child's interests in activities, rewarding good faith efforts towards a goal, and rewarding social behavior.  

Basically, the theory is that you want the autistic person to be able to communicate in ways people can understand (ideally speech since that's the societal standard, but speech isn't necessary to communicate effectively).  You also want the autistic person to interact with others and find that interaction rewarding.  Finally, you want the autistic person to be able to regulate their behaviors, handling emotions like frustration and anger in appropriate ways.  

As long as those goals are handled in a respectful, supportive way, and the therapy truly is child-directed, this seems like it's likely to A) help, and B) not traumatize and destroy at the same time.  

I was never given any type of therapy when growing up, so unfortunately I have little personal insight to shed on the matter.  However, many in the autism community have plenty to say on the matter, so please give the link-filled sentence near the top a few clicks, if you're interested.  

While researching this therapy, I ran across this sample of therapy's practices as well, which you can look over if you're interested.

(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.)

From the Web: Making Interviews Even Worse

Interviews are awful. They're a glorification of the first impression, a phenomenon that is notably inaccurate for actually assessing people, their personalities, and their skillsets.  They are also nearly mandatory for getting hired in the United States.

There are whole classes offered in colleges on how to do an interview.  These aren't for autistic people, they're offered for everyone, because doing a good interview is an art form.  Few people are naturally good at interviews, so these classes are offered to help offset the dozens of stumbling blocks involved in the process.  Things like what to wear, what questions you might be asked, what type of resume to bring, and how to answer tricky questions like "what thing would you change about yourself/what's your most negative trait?"  Mostly, though, interviews are an exercise in lying through your teeth.  

Autistic people tend to be worse at interviews than the general population.  Lying often doesn't come naturally to us, so when asked "why do you want to work at this company?" we're more inclined to say "because I need a roof over my head and food to eat," rather than the expected answer of "oh, I love Company because X, Y, Z, and I think I'd fit in really well and enjoy the work."  The hiring process is so skewed that in order to get hired, you need to say things like that, even though you most likely do not believe them.  Even if the job in question is just being a stocker at a grocery store, or a janitor at a retail store.  

Even if you've learned what the right answers are to all these questions, and what's expected of you, you still need to manage the in-person interview with another live human being.  Statistically speaking, that human being will not know much, if anything, about autism, and will only see it as a liability and a reason to pass over you.  If you disclose your diagnosis during the interview, that will be a factor the interviewer will consider consciously, and ableism is quite rampant in the United States.  If you don't disclose your diagnosis, you're at the mercy of how well you can "act normal" during the interview process.  Your tone of voice, amount of eye contact, posture, facial expressions, and word choice will all be scrutinized by the interviewer.   All of which is entirely aside from your actual skills for the job.  

Then there's the dress requirement (not everyone can shell out for a nice suit or appropriate formalwear), the resume mess (formatted just so, with just the right information tailored for each job you apply to), and the luck factor (better hope the interviewer likes you).  In short, it's no surprise autistic people suffer much higher rates of unemployment and underemployment.  

It's probably quite clear by now how poorly I view the hiring process.  So what could make it worse?  Well, how about making the interview one-sided, recorded, and having it be analyzed by a face-reading computer?

You would think this would be an improvement, since there's no longer a human being to manage interactions with... but the thing is, that also means there's no feedback and no discussion.  There's no chance to explain your diagnosis, no chance to make an actual human connection.  You, as a person, are represented solely by how well you can lie to a webcam and pretend it's a person.  This includes making eye contact with the webcam as if it's a person, which, if you read the comments on the link, neurotypical people find difficult also.

Effectively, this development makes interviewing worse for everyone.  Now, not only do you need to learn how to do a regular in-person interview, you also need to learn webcam etiquette, how to look a webcam in the eye and pretend it's a human, and how to have a one-sided conversation while lying through your teeth.  It is, as one commenter points out, more appropriately termed an audition.

Of particular irony is the fact that this software will, invariably, be used to hire for customer service and people-facing jobs.  So instead of putting the candidates in front of actual people in order to check their people-skills, they will put them in front of cameras.  Y'know, thus checking their YouTuber skills (performing in front of a camera skills) instead.

Now in case this isn't unfair enough, people with autism tend towards more unusual facial expressions.  Some are hyper-animated, but some, like me, are more stone-faced.  With computer analysis of my face as I try to talk to a camera like it's a human, I have even less chance of passing the interview process and acquiring a job.  Thanks, thoughtless jerks in marketing and human resources!

Legwork and Life, week of 8/14/19

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.

This week, I am viciously itchy.  I seem to have developed a skin rash due to my new maca root supplement, which... it's in the list of possible side effects, but I'm very displeased all the same.  There's probably a person out there that enjoys being itchy, but that person is definitely not me.  I've banned myself from itching with my fingernails, but I can't help but itch, so I'm using my knuckles.  Life is about making compromises you can mostly live with, right?

I'll be seeing my doctor tomorrow, so she'll probably get an earful on the subject.  I'm still really hoping there's some way to make this work that doesn't involve spending even more money or returning the product...  I've already halved the dosage twice over the course of the week, which you'd think would be enough... but likely I simply don't know enough about chemical interactions.  Which is what my doctor is for!

Anyway, I'm making the best of the situation.  Hydrocortisone cream seems to help with the itching somewhat, but it's not a permanent solution by any stretch.  And honestly, the whole red and white speckled itchy skin isn't really a good look for me.  Or anyone.  So hopefully the situation can be resolved fairly quickly and easily.  

In the meantime, I seem to be sleeping a little better.  Still haven't gotten the bed moved, though.  I'm going to blame family hubbub and such for that.  We missed one set of aunt and uncle due to life things, but caught the other for a few relatively relaxing days.  I say relatively, because being out of my comfort zone isn't precisely relaxing.  Still, getting to go kayaking and spending time with them was pleasant, and I even managed to avoid popping the blisters I got from the kayaking.  Thus they healed up exceedingly fast and didn't trouble me after the first day.  

I do have further evidence towards the high histamine theory now.  I have, in the past, really enjoyed kayaking.  This time?  I was actually pretty miserable.  The conditions were fantastic: just barely a wind to keep the bugs away, calm water, warm but not too hot.  But once I got out there and put my arms to work... miserable.  It wasn't exactly like I was struggling to breathe, but it kind of reminded me of my experience with the cold, where I just... wasn't getting enough oxygen, and it affected my mood.  

Adding to this was the sure knowledge that I'd eaten two relevant foods in good quantities: spinach (high histamine) and tomatoes (either high histamine or histamine liberator, depending on which source you ask).  So that was valuable to note.  The plan now is to get my bike fixed (it's slipping gears and basically unusable), and then try biking more vigorously and steadily than usual.  Then I'll do that again with a big dose of vitamin C powder-infused water, and compare the two experiences.  

This plan does rely on me managing to get my bike loaded into my van, driving over to a new bike store, walking in, and demanding they use an aftermarket part to repair my bike, which...  so far hasn't gone well.  But I'm almost getting ahead on this blog, so maybe I can pony up the energy soon.  

Reading the Research: Deadly Camouflage

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 on camouflaging, otherwise known as "why you might not know I'm autistic if you ever meet me" and also "why it took 20 years to get my autism diagnosis."  

Autistic people do not fit into a group of neurotypical people, generally speaking.  In fact, our differences often make it hard for us to be understood, and to understand others.  As such, we're often taught or outright told to change ourselves to be more like neurotypicals, so we can be better understood.  This includes things like controlling our eye contact, toning down our creative word usages, and refraining from calming activities like rocking, flapping our hands, or other adaptive behavior.  

This message of "don't be yourself, be what others expect you to be" is relentless.  It's formalized in most types of Applied Behavioral Analysis, which is the "standard" autism therapy, where they modify a child's behavior in order to make them more "normal."  Not all forms of ABA do this, but most do.  Even without that, there's plenty of "don't be you" to go around.  

Now, the article specifically talks about taking on neurotypical traits, not suppressing autistic ones... but from my perspective, those are merely two sides of the same coin.  The researchers may disagree, but I cordially invite them to ask the autistic community at large, and also to look carefully at their results.  The effect of both behaviors is now documented: correlations were found with poorer mental health and delayed diagnoses, which generally means a smaller, less supportive support network of friends and family.  

Essentially: trying to be what you're not is bad for your health.  Mental health, emotional health, and physical health, it's all interconnected and covered here.  

I make a point of highlighting this not because I think autistic people should never have to change or adapt... but because society relentlessly chants "we're just fine, YOU'RE the problem" at us.  That isn't how you make a better world for everyone, it's how you drive a group of people to despair and high suicide rates.  Which, oh look, the autistic population has.  

Ideally, neurotypical people and neurodiverse people of all kinds learn about each other and adapt to better support each other. In practicality, there's people on both sides that refuse to do so... the difference is that in general, neurotypical people have the power to change things, and autistic people do not.  

(Pst! If you like seeing the latest autism-relevant research, visit my Twitter, which has links and brief comments on studies that were interesting, but didn't get a whole Reading the Research article about them.)

Book Review: Disability and Inclusive Communities

Disability and Inclusive Communities, by Kevin Timpe, is an overview of the history of disability, its historical treatment in the Bible, the United States, and in the Christian church.  It's published out of a local Christian college, making it a little harder to find than most of the books I've reviewed, but there's still an Amazon link there for anyone interested. 

At 107 pages plus a few more of references, it's not a long read, but it is an important one.  It is, effectively, an overview of the exclusion of disabled people in the United States, and the various facets of that: social, legal, religious, interpersonal, and systemic. 

For a book ostensibly focused on inclusion, it spends a lot of its time talking about exclusion.  Fully half the chapters focus on various types of exclusion, which is perhaps fair given the world's general treatment of people with disabilities. This is a book that was definitely written by an academic, but it uses fairly simple language, making it more accessible than any other piece on the subject I've seen. 

The book is full of self-aware touches like that.  The author is by far the most cautious writer I've ever read on the subject.  He shares some of his family's story, because his son is autistic and also has some other differences and challenges.  But not too much, because he recognizes that his son's story is his son's to tell (or to not tell).  He's also wise enough to recognize that he, as a non-disabled person, isn't ideally suited to write about the subject... but also that somebody has to. 

The author also doesn't flinch about describing the exceptionally poor treatment the Christian church has historically (and all too often, recently) given disabled people.  The reasons for this are discussed, though not in overwhelming detail.  But he quite rightly points out that those reasons rely on an incomplete understanding of the New Testament.  The church is, of course, also inclined to take on the philosophies of the cultures it lives in, which in the US, means valuing youth and health above all. 

Of particular note to me was the section on US law, which gave both the history of disability civil rights, and the various iterations of laws around accommodations and education.  There isn't much on the subject and I was already aware of most of it, but it helps to have it all put together in line.  Really, the same goes for the Biblical understanding of disability.  I was familiar with most of what was discussed, but it had never been laid out plainly like this. 

In general, this book and its author were knowledgeable on the subjects they discussed.  The perspective was basically right on every point.  The author even went to the trouble of consulting with various people with disabilities, to try to be sure he was getting the full picture and being sensitive to the topic.  He didn't succeed 100% at getting every detail of that correct, but that's perhaps as much on his references as it is on him. 

The one thing I wasn't impressed with was the comparison between the Deaf community and the autism community.  While it is definitely true that some people in the autism community believe autism itself isn't a disability... the general consensus that I tend to see is rather: "in a perfect world, we might not be disabled, but because that's not how it is, we are definitely disabled."  And of course there are people with sensory sensitivities who might consider themselves disabled even if the world was perfectly suited for autistic people. 

I suppose another point of criticism here is that the book doesn't really offer concrete suggestions for how to improve inclusion in a church or school.  Instead, it offers broad ideas, like "listen to your disabled people."

Read This Book If

You're anyone would benefit from an overview of disability and exclusion in the United States.  This is a very good starting point due to its conciseness and use of understandable, jargon-less language, and you needn't be religious, disabled, or non-disabled to appreciate what it offers.  It also contains a reasonable list of references and further reading at the end, for people who want more information or any particular part, or overall.  Mostly, though, this is a good place to start because it's gotten the vast majority of its philosophy correct on the first try.

Legwork and Life, week of 8/7/19

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.

My wifi experiments are bearing some fruit.  I can't say I feel all that much better rested yet (haven't been sleeping enough), but when I shut off the wifi at night, it feels almost like a weight has been lifted off my shoulders.  This has happened every time I've turned it off for the night, which... I mean, I could be imagining it, that's definitely possible... but I feel like if I was going to confirmation-bias-hallucinate something, it'd be something more akin to "feeling less brain buzzing" or something.  

So I don't know, it's potentially beneficial anyway.  Still trying to decide whether it's worth the annoyance of having to have my data plan on while reading in bed.  I like checking my webcomics and reading research articles before going to bed, but that has to be done on the data plan if I don't have wifi available.  

Finally, regarding the wifi/dirty electricity experiments, I still haven't moved my bed away from the smart electricity meter yet... maybe I can do that this week, with my spouse's agreement.  It's his house and bed too, after all.  

And because my supplementation regimen isn't complicated enough/I still have problems, I've added something new to my lineup.  I'm biologically female, and therefore suffer periods roughly once a month.  Keyword here is "suffer."  Apparently curling into a miserable ball for a couple days a month is not supposed to happen.  Discomfort is expected, misery is not.  So I've started on a (my) doctor-recommended supplement, which will hopefully, in a month or so, make my periods less misery-inducing.

I don't, as a rule, have any particular feelings about my biological sex or anyone else's, but at least once a month, I resent my internal organs' ability to cripple me for a time.  As I imagine anyone else might resent something if it disabled them with such regularity.  Hormones end up being the issue.  I have unstable, non-clockwork hormones, for some reason.  This supplement will regulate those hormones, but in a way that doesn't add any more to my system the way birth control does. 

I've always been kind of leery of hormonal birth control, and as it turns out, that was a good thing.  Apparently hormonal birth control can come with some really "fun" side effects, particularly for a system as sensitive as mine.  I'm very uninterested in massive mood swings, any additional weight gain, soreness, nausea, or any messing around with my libido. 

This supplement isn't hormonal, but the herb it's mainly made of is apparently involved in supporting the hormonal cycle.  So I guess we'll see.  

Reading the Research: Appearing Disinterested

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 really makes me question the definition of "provocative."  The premise of this paper appears to be, "autistic people, like other humans, want social contact and relationships with others.  This is true despite behavioral traits (like poor eye contact) that would seem to indicate otherwise." 

Calling this "provocative" "challenging" or "new" strikes me as very disturbing.  I actually spent a couple minutes asking my computer screen/academia variations of "why?" after reading the article.  If accurate, it suggests that most of academia has never met an autistic person or read much of anything published by one of us.  In the fields that deal directly with studying us, this is more than disturbing, it's outright terrifying. 

Once and for all, everyone.  Autistic people are people.  We have the desire to make friends, be with others, maybe find a significant other, get married, have kids, etc.  I have at least one autistic friend who is suffering from crushing loneliness because of how they've been treated by others.  It can be that due to our unusual behaviors, points of view, and differences, that we despair of having friends or relationships, and decide we're better off without them... but any person can do that in the right circumstances.  It's not an autism thing. 

Lack of eye contact in neurotypical people may signal a lack of interest, but for us, it can be a way of minimizing pain or moderating information overload while in a conversation.  It hurts me, like a baseball bat to the head, to look directly into peoples' eyes, or even right at at their faces.  If I'm having a bad sensory day, a high anxiety day, or I'm upset with the person, I won't look directly at their faces, because why should I increase my suffering when the tradeoff is simply "the comfort of others"?  Ya'll can deal with some poor eye contact so I can have another 15 minutes out of the house, and finish my grocery shopping or whatever. 

Repetitive movements can be a way of calming one's senses in a busy environment.  Some people play with fidget toys, knit, or do other activities while conversing.  This is like a full-body version of that.  I once knew a guy who bounced both his knees.  He said he had hypertension, I think, but I actually learned to bounce one knee because of him.  It's a movement that can be hidden below a desk, which makes it much more socially appropriate than full-body rocking.  However, the larger the movement, the more comforting and realigning it can be for the senses.  Behaviors like rocking, spinning, rolling, etc. serve this purpose. 

Echolalia, or repeating, word for word, phases or words spoken to you, is probably the toughest of these behaviors for a neurotypical person to handle.  Most people have been subject to mocking via repeating our words back at us, often as small children, but even sometimes when we're older.  When an autistic person does the same thing, it can be hard not to see it as either mocking or as a sign of disinterest or lack of understanding.  It's simply not done. 

Thing is, conversations are hard.  The demands of "a proper conversation" with give and take and paraphasing what the other person says to be sure we understand it, and responding in the same mood, and finding what words to move the conversation along, can be extremely difficult even for neurotypical people.  Not surprising, then, that autistic people find other ways of doing things.  We can even build up whole vocabularies of phrases used differently than the "normal" way, kind of like our own personal language or set of in-jokes. 

The actual article linked with the DOI at the bottom of this article also mentions lack of pointing.  I'm not sure how common or uncommon that is in autistic people, but I strongly remember my mother telling me it was rude to point at people.  I'm not sure if that explains the whole of the phenomenon, but it might factor in.  It may also be that the pointing behavior, signaling a bid for attention, has simply been rewarded with negative consequences so much that most autistic people don't bother.  I'm honestly not sure. 

If nothing else, please remember the bottom line: different does not mean broken.  We are still people.  We still want to have friends, relationships, family, etc.  Please don't mistake our differences for unsociability. 

(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.)

Histamine Overload Day

The Theory

When I was at my doctor's office (my LENS doctor, not my primary care doctor who I rarely see), we were chatting about my health and she suggested, based on my previous complaints, symptoms, and observations about exercise, that I try experimenting with high- and low-histamine foods, as I might have an intolerance or simply be flooded with them.

Essentially, the theory goes that some people may have too high of levels of histamines in their bodies, and this has bad effects on your brain, your immune system, and your digestive tract.  You can tailor your diet to avoid high-histamine foods, which are mainly fermented foods, and thus live a healthier life... but this is only likely to help if you actually do have the intolerance or systemic overload.  

My doctor explained this as kind of like having a low level allergic reaction... except all the time.  So you're always dealing with things like congested airways, itching, a skin rash, watery or itchy eyes, etc.  The thing is, it may be so mild you don't even notice it, yet still have bad effects on your life.  And in fact, allergies like this can entirely bypass your nose and just affect your brain instead, causing depression, misery, and anxiety.  Now, the reasons she brought this up included the apparently-not-insect-bite-after-all bumps I came back with after one expedition for black raspberries, and my lifelong hatred for exercise.  

The latter doesn't immediately make sense.  The thing is, there are two categories of foods you have to watch out for with a histamine issue.  The first is foods with high histamines, of course.  More histamines is bad.  The second category, though, is histamine liberators.  Your body stores histamines, and histamine liberators elbow your body into releasing them, which makes you feel worse.  

Exercise, as it happens, has that exact same liberation effect.  So a person would reasonable hate exercise if it felt like they were dying every time they did it.  Like, say, if their throat closed up, they found it hard to breathe, they itched a lot, and in general they felt terrible.  Which... isn't an unreasonable assessment of my feelings on jogging and most other forms of exercise.  

There's also the fact that in the summer, I'm basically marinating in toxic algae spores due to the pond outside, which... I'd assume would produce histamines, given its deleterious effects on my system if I go outside and breathe for like two minutes.  I also find myself sleeping with my arms over my head, which is notably helpful for opening airways, but does a number on my lower back... so you'd think I wouldn't be doing that on purpose.

Counter-evidence is that I tested negative on a battery of allergy tests at the beginning of the year.  Like, I'm allergic to nothing they tested.  Literally nothing.  The test included various local plants that often set people off.  I also haven't personally noticed regular congestion and such until recently.  It's like my cold never truly ended.  I cough a bit here and there these days, and occasionally need to blow my nose.  

There are two informational documents I was sent by my doctor, so here they are: The Healthline Summary and the Topic-Specific Site.  I read them both, or at least skimmed them both, and paid careful attention to the list of foods.  Surprisingly, I don't really like most of the high-histamine foods.  So most of them aren't in my diet.  I can't say the same for the histamine liberators, though.  A good number of those rotate through my diet regularly.  

So there's cause to test this theory my doctor has... and I intend to.  Slightly recklessly.

The Plan

I am, as of yet, still fairly young and thus resilient.  I am therefore going to take a single day to present my system with many high-histamine foods and histamine liberators.  The results will either be dramatic and prove the point, or minimal-to-non-existent, and strongly suggest that this is not an issue I have.

I should note my doctor specifically told me not to do this, and instead suggested trying a couple foods here and there, and seeing if I noticed differences.  Which is why I'm terming this "slightly reckless."  I don't think I'm putting my life on the line, trying this, but I do think I'm probably setting myself up for an extremely miserable day.

To do this experiment, I read over the foods, and prepared a menu for the day, incorporating enough of them to hopefully give a good test result.  While devising this menu, I made efforts to make the meals healthy, because it's already known that eating junk food makes you ill, and eating horrifyingly mismatched foods (like, say, jerky, pickles, and chocolate in the same mouthful) would also complicate the results by making me miserable as I ate them.  

I also had to allow for my particular diet choices, which meant only humane meats.  I know where to get bison jerky, so I can still try the fermented meat option, but things like store salami and most smoked meat products are out.  

With that in mind, the menu is this.

Breakfast: Cup of Greek yogurt with fresh pineapple and strawberry slices mixed in.  Sourdough toast with mixed nut butter on top.  

Lunch: Fancy grilled cheese with tomato soup.  Sourdough bread with aged cheese and shredded bison jerky.  Pickle and a handful of spinach for a side.  Orange for "dessert."

Snack (if desired): chocolate and/or handful of roasted mixed nuts. 

Dinner: Marinated chicken (apple cider vinegar and soy sauce marinade), served over brown rice, with a banana and spinach salad with vinegar dressing for sides.  

Beverages: Green tea, black tea, and possibly a serving of booze at dinner.  

For extra credit, I may try to exercise that day as well, which would help free up any stored histamines I might have.  I haven't quite decided on this, because exercise makes me miserable, and I don't want to muck up my experiment by biasing it

Now, assuming this theory is correct and I have this problem, the resulting suffering will be misery.  I'm young enough to try this, but not so reckless that I don't have a backup plan for alleviating my misery.  When discussing this theory with my doctor, she mentioned that while testing foods, I might keep vitamin C on hand, as it helps clean histamines out of your system.  So now I have a nice jar of lemon-flavored vitamin C powder, which I will mix into water and consume at regular intervals, should the effects be overwhelming.

I also have various decongestant medicinal products that served me fairly well during my cold a few weeks ago, and I might see about acquiring an anti-histamine as well, which would help curb any impressive acute symptoms.

The Day Of

The day started fairly normally for a summer day: not enough sleep because of the light levels.  Here's my ingredients:

Some of these we had at home, but most had to be bought specifically for this experiment.  This isn't even all the things, it's just what would fit neatly in the picture.

Breakfast commenced.

My yogurt cup didn't hold nearly as much fruit as I wanted it to, so I had some on the side.  I decided tea with breakfast was going to happen.  I like tea, but I usually don't treat myself to it. So that was nice.

After the first few bites, I had a cough, which left about as fast as it came.  I've had those on and off in the last couple weeks, and still have no real idea what's going on.  A more lingering effect, which I didn't test because I was focusing on work and other things, was the seeming difficulty breathing.  My work is sedentary, thankfully, so that was not a crippling issue.  But it was very definitely notable.

More interestingly, and more detrimentally for sure, was the brain fog that really shouldn't have accompanied such a healthy meal.  It could be the yogurt, which I'm not really accustomed to eating, and is dairy, after all.  I've had poor effects with dairy.  That would normally be a factor I'd eliminate for this test, but I had enough trouble coming up with a meal plan without that.

I also felt kind of like my stomach lining was... overwarm.  "Burning" implies actual pain, and this wasn't a form of pain I recognized.  It was just uncomfortable and a little worrying.  It didn't really feel like acid reflux, either.  So that was definitely worth noting.

Lunch was late, because I guess I had too large a breakfast in my enthusiasm for this experiment.

I... still really really do not like pickles.  Like wow, yuck.  I ate all four on the plate, but unless I can foist the rest off on somebody else, I don't think I'm going to eat them.  The rest was basically fine, thankfully.  I ate the banana for lunch instead of dinner because of how ripe it'd gotten, which was fine.  I was originally going to shred the jerky and put it on the sandwich, but I ran out of time due to needing to run errands.

I did again feel the sort of burn on my stomach lining, which was definitely disconcerting.  I noticed a certain difficulty in breathing again, like I had to work harder for my oxygen.  I may or may not have been imagining that, or letting confirmation bias run away with me.  This experiment couldn't be done double-blind as easily as my other experiments.

After lunch, my day's pace picked up, which, combined with the brain fog, caused me to forget to take a picture of dinner.  It was the meal as planned, though, vinegar/soy sauce marinated chicken over rice, with balsamic vinegar dressing on spinach, and the orange.

At dinner, I also decided to be a strange person and mix a mug of green tea with a shot of vodka, which wasn't as horrifying as you'd expect.  Actually, I didn't really taste the vodka after it had mixed in with the tea and warmed to the correct temperature.  I have no idea if that's normal, or just a function of the particular brand of vodka (Grey Goose).

The burn in my stomach lining re-commenced after consuming two types of vinegar (but before consuming the alcohol, which does its own form of stomach-burn sensation).  I felt kind of warm in the face, which was new.  I would also say the brain fog returned, at least to a degree.

I finished off the night without needing to resort to my safety net:

"BioFizz" is maybe not the most marketable name I've ever heard, but the product is quality.

Vitamin C is excellent for helping the body filter out histamines, so mixing either of these powders into water and consuming them would have helped flush my system of the mess I'd forced into it.

The Results

I wasn't, I suppose, really expecting to break out in hives or suddenly have my throat close and have to be rushed to the hospital, but I guess I'd hoped for something a bit more dramatic than "slight trouble breathing," "kinda burny stomach lining," and the ever-debilitating "brain fog."  These were clear and obvious symptoms, but not the type I wa expecting.

I discussed my findings with my doctor.  She mainly told me it was something to be aware of, when considering why I might be feeling poorly.  It's clearly not the beginning and end of my health considerations, since I didn't end up in the hospital, but the difficulty breathing is suggestive, as are the other effects.

Something of note here is that many of these foods, I wouldn't normally eat.  They simply don't taste good to me.  Pickles and vinegar in particular come to mind, but in all honesty, I didn't really enjoy the jerky either.  There can be a correlation between "what tastes good to you" and "what is good for you."

This is obviously not always the case, as per the various cases of autistic children (and sometimes adults) refusing to eat all but a very limited subset of foods.  Sometimes those refusals aren't merely based in taste, they're based in texture and sensitivities thereof.  I would guess that the "if it tastes bad, you shouldn't eat it" concept of eating is probably only referring to taste.

A good test during this histamine overload day, which I should have done but was so brain-fogged and tired that I didn't, would have been to go biking or power-walking.  The difference in my ability to breathe that day, versus regularly, would have been valuable information.

I'm not entirely out of luck on that front.  While I probably won't redo the high histamine diet, I can attempt the opposite thing: dosing myself up with vitamin C, and then exercising at a moderate intensity.  If the experience isn't horrifying, that's all I'll need to know.  Perhaps I could even try jogging again.  Being able to tolerate high-intensity exercise would make it possible for me to burn calories easier, which would go a long way toward checking the slowing metabolism/rising weight effect of middle age.  Exercise also burns energy I tend to use being anxious, so it might also do wonders for my mental state, too.

In the end, it seems that high histamine levels are a factor in my life, but not an all important one. Fixing my histamine intake would most likely have positive effects, but is unlikely to solve all my health problems the way I'd like it to.  I'll make note of any future testing I do on the subject, particularly the exercise/vitamin C test.

Edit (9/2/19): Histamines are definitely the bane of my exercise.  While apparently overdosing on histamines didn't really change my day-to-day experience, taking an anti-histamine and then exercising as hard as I could?  Yielded no misery at all, just hard work.  It was extremely weird to have those two sensations divorced from each other.  Exercise has always been a miserable experience for me in the past.  I'm going to write an exercise-related post update for this.  As it happens, I know of a researcher that might well be interested...

Edit 2 (9/12/19): Yyyep, it's the histamines.  I tested my archnemesis of exercise, jogging, with an anti-histamine on a muggy swelteringly hot day.  I got very tired and my muscles screamed for mercy, but I did not get miserable.  I wrote another post about the exercise experience, which is here!