Monday, February 19, 2018

Reading the Research: Self-Efficacy

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

Today's article talks about "self-efficacy" which is psychology's word for "the belief in one's capabilities to achieve of a goal or an outcome."  In plaintalk, it's your belief in your own ability to get stuff done.  This is separate from competence, or how good you are at something, because I'm sure you've run into that person that's actually awful at whatever they're talking about, but thinks they're good at it.  That's a fairly common thing, and that person has low competence at whatever they're talking about, but high self-efficacy. 

I found this article interesting because of things I keep hearing from my doctor, and one of the books I picked up from her recently by Dr. Temple Grandin.  It seems that a common problem for autistic people is not wanting to go out and try new things, push our boundaries a bit, etc.  So instead we stay home, doing only our favorite things (often in front of the computer).  This can lead to not getting a job, not meeting people, and becoming a recluse, which is often not ideal.  There are a lot of reasons for behavior pattern, but one of them, I would bet my next week's worth of meals, is that many of us lack this self-efficacy for social situations and trying new things, regardless of our actual capabilities. 

These scientists have apparently developed a way to test for self-efficacy, but in a lot of different situations.  So for instance, I might have high self-efficacy when it comes to my favorite computer game, because I feel competent with it and that assures me that I can do almost anything I want to in it.  But when I get to work and a fellow employee approaches me with a problem, my self-efficacy in that situation might be very low, because of how difficult social interactions have been for me in the past.  Regardless of my current skill level, this can be the case.  As such, I might withdraw from the situation rather than trying to resolve it. 

In general, high self-efficacy is a good thing, though when not backed up with actual competence, it can result in learning experiences.  The researchers' results show that high task self-efficacy makes for better on-the-job performance in managing and completing tasks.  The higher emotional self-efficacy, the better the person will handle stressful situations and situations with conflict.  And, interestingly, the less such situations will bother them.  And, perhaps unsurprisingly, the better a person's belief in their own empathy, the more they're likely to help out their colleagues by doing extra work when needed. 

The researchers conclude that their test will probably be useful for career development, training, vocational counseling, and even for use within the workplace... but they don't address how to develop it, which is most relevant for parents, teachers, and professionals.  For that, I had to trawl the Internet a bit.  Here's a decent overview with some additional links.  I'll probably have more to say on the subject after I've read Dr. Grandin's "The Loving Push." 

Friday, February 16, 2018

House-Hunting While Autistic, Part 1: The Criteria

This will be the first a series on my house-hunting experience.  My spouse and I have recently searched for, located, bought, and are in the process of moving into a new home, and I thought it might be useful to explain some of the challenges and why we made the decisions we did.

-------------------

Why A House?

My spouse and I have rented an apartment together for years, now, and the rental rates just keep going up, for less and less space, services, and courtesy.  I'm sure in some places it's cheaper to rent rather than buy a home, but in our case, we figured out we could get about twice the space, for about the same price per month.  So by that metric, it only makes sense.

We don't have much illusions by way of expecting to get more money out of the home than we put in, although I'm told emphatically that used to be the case.  Houses were an investment, people said, and you could expect to gain money if you took care of the house.  That honestly does not seem to be the case any more, even in the market type around here.  

In addition to paying less for more, we also wanted to live in a less populated area, in a different neighborhood.  I've complained in the past about the apartment complex we currently live in, but in brief: it's loud (car horns, people shouting, children shrieking), at all hours of the day.  The apartment complex has changed hands four times in the last two years, minimum.  The complex's repair staff keeps changing, information keeps getting lost, and whatever remains seems to be mainly ignored.  The gutters sit clogged, month after month.  The roads and parking lots go unplowed, with never enough parking spaces to go around even in good weather.  The trees threaten to fall on the buildings near them.  And the public spaces are dirty, trashed, and get used for all manner of unsanitary and antisocial activities.  

What Kind of House?

I know most people put together some kind of vague criteria for what they want, and then dive into house-hunting until they find something they adore the look of.  That... was not how we did things.  I'm autistic and detail-oriented, so I wanted to nail down what we wanted, why, and what things we could and couldn't compromise on.

This required a lot of talking, and involved some arguing and a bit of sulking at times.  Communication is not a strong point for either of us, so this was a lot more work than you'd think, and a house has a lot of fiddly details.  Spreadsheets, word processing documents, and hours of verbal and typed communication went into the process.  

We first set some minimum requirements for what we wanted.  2 bedrooms, 1 bathroom, a larger kitchen, in-building washer and dryer, 3 prong outlets in every room, central AC/heat, basic appliances, and parking that's at least off-street.  Also, the house had to be livable already, we didn't want to spend weeks fixing up a home before we could live in it.  

After that, we decided on what we'd prefer to have... but were okay with compromising on, if it came down to it.  We also set some additional "wishlist" items for an ideal home, which we weren't really expecting to find, but knew we'd really enjoy having if we could get them.  In the l end, we opted to address several issues with these lists:

Sound Sensitivity: This is one of the reasons we wanted multiple bedrooms.  We technically really only need one to sleep in, but having a second to sound proof for a quiet space, or use as a home office, or have guests over in, was very important to us.  This is also why we opted to look for a place that didn't share walls, or only had one shared wall, preferably away from high-population areas, children, and other sources of loud noise.

Gastro-Intestinal Challenges:  Both Chris and I suffer from gastro-intestinal issues.  He's lactose intolerant, and I get constipated and moody if I'm fed dairy.  I also end up suffering extra inflammation around the time of my period, and have bouts with diarrhea.  We're still figuring out what exactly causes all this, but in the meantime, it behooves us very much to have at least two toilets in the home so one of us doesn't suffer while waiting for the other to be done.  We also opted to look for a place with a larger kitchen, which will allow more complicated food prep to cater to special diets, as well as elbow room and ease of use.

Executive Functioning: While Chris and I could probably fix a home up using the Internet, money, and stubbornness, we knew that would be exhausting and time-consuming.  We decided to opt for a "ready to live in" place, rather than a "fixer-upper."  We also wanted a place that had most, if not all, of the necessary appliances for living.  A washer, dryer, refrigerator, stove, dishwasher, etc, are all things you can buy post-moving in, but you have to price them out, and it's complicated and time-intensive to do so.  If it turns out that we hate one of those appliances post-moving in, it can be replaced.  But signing up to buy all those things was a deal-breaker for us.  It was already going to be hard enough to find a good home, let alone adding that stress on top of it.

Depression/Anxiety: This is another reason for the multiple bedrooms.  Separating oneself from the source of anxiety, or having a quiet place to go to think about things, can be a very important tool against depression and anxiety.  The second (or third) bedroom could be both a home office and a place filled with things I enjoy, like my lava lamps, decorative fountain, healthy snacks, and a comfy chair.

We also stipulated that we wanted a large enough space to entertain friends and family.  Having a comfortable place to invite people back to, whether that's just to chat, sip tea together, or host a bad movie night, we wanted to have the option available.  Finally, on "ideal wishlist,", there was a hot tub.  I used to love having baths, but fell out of the habit when I went to college.  I've since found I don't fit into most tubs anyway, so the issue has mostly fallen by the wayside... but soaking in hot water is well known as a relaxing thing to do, so we added it, just in case.

Time Management: I work from home, but Chris doesn't.  So we made sure to house-hunt in a relatively small area in order to be close to three important places.  First, Chris' workplace.  A long commute is a great way to ruin a perfectly good job.  Second, my parents' new home.  My parents moved to our area recently, and I wanted to be close to them so it would never be a problem to go visit.  Third, the local supermarket.  Shopping is already fairly time intensive, so being 15 minutes or less away from the supermarket makes for a much less frustrating experience.

We also decided to put preference on condominiums, rather than true houses.  The reasoning for this was that we'd prefer not worry about lawn care and landscaping.  Neither of us likes that stuff, and it would be one more thing to worry about.  Bonus points if there was a recycling program and community trash pickup so we wouldn't have to worry about that, too.

Light Sensitivity/Seasonal Affective Depressive Disorder: I am both photosensitive, which is to say that sunlight and bright lights can really hurt my eyes, and prone to seasonal affective depressive disorder, meaning I need to get a lot of sunlight whenever possible or I'll be depressed.  These two traits are naturally and annoyingly at odds with each other.  So the compromise was to look for a place with at least one large, south-facing window... and to have a larger bedroom with windows that could be easily covered with blackout curtains.  On cloudier days, and normal days I'm handling the sunlight better, I can sit in front of that window with my cacti, or even go outside.  On bad days, I can hide inside and draw the curtains, or stay in the bedroom. 

A copy of the house-scoring spreadsheet we ended up settling on is here.

Next week I'll describe the actual house-hunting, and why it was a lot more difficult than expected.

Wednesday, February 14, 2018

Legwork and Life, week of 2/14/17

I'm not sure if it's the fact that we're leaving soon, or just my imagination, but it feels like the apartment complex has been extra loud and obnoxious this last week or so.  Had someone leaning on their car horn at 6:30am a few days ago, which woke me out of an already restless sleep.  This is extra frustrating because generally once I'm awake in the morning, I'm awake.  There's no going back to sleep.  So one inconsiderate jerk can start my morning off poorly... and has, repeatedly.  Though thankfully only the once at 6:30am.  7:30am seems the more normal time for this jerk to show up, which is 20 minutes before Chris' alarm goes off in the morning... 

I'm also not going to miss hearing children shrieking outside every morning and afternoon.  I know some people love hearing children make noise, but I just can't equate high pitched squeaks and shrieks with pleasant feelings when each one of them hurts my ears and disrupts my concentration.  I presume the social obsession with babies and small children will continue to elude me for the rest of my life. 

In happier news, though.  Yesterday we closed on the condominium I've been talking about for the last few weeks.  (For the confused: "closed" means we've signed all the paperwork, and we now officially "own" the home.  We'll be paying a mortgage for a loooong time, but it's still way cheaper than renting.)  The drive to the place was long, but we caught lunch afterwards with our realtor, who we like quite a bit. 

Chris was a sweetheart and took the entire day off, so instead of having to rush back to get him to work, he stayed home, and made me beef stew, which is, at this point, probably my favorite non-dessert food.  He also made his rosemary bread recipe, which is both delicious and relatively simple.  So that was a nice way to spend the rest of that day. 

I'm looking forward to being moved over into the new home.  I expect the place will be much quieter, not only because there's only one shared wall, but because the dwelling places are spread out much wider.  Even if children live in the area, their noises will be much further away.  And really, I don't hate kids.  I just wish they'd be quiet. 

I suspect my biggest annoyance at the new place will be geese, rather than ill-mannered jerks with car horns.  There's a large-ish pond out in the back yard area of the condo, and while it doesn't look that deep, geese don't really care as long as there's grass and water.  Chris jokes that we can just get biodegradable airsoft pellets and shoot the geese if they get too close to the home.  I hate to admit it, but I am awfully tempted to allow it.  You can't hunt geese for food, but I'm not sure there's a specific law that prohibits shooing them away forcefully. 

In other news, I seem to have opted for a 5 day a week exercise program.  Twice a week, I go to my parents' place to use their gym, which comes with exercise classes.  My mother frequents those, and once or twice a week, I'll join her.  Those classes involve a lot of arm exercises, which are useful because I have little patience for doing arm exercises by myself.  They also involve core exercises, which are important for health and fitness.  Then, too, the gym has a range of exercise machines, which I make use of. 

At this point, I'm eschewing the recumbent bike and using a cross trainer, treadmill, or elliptical machine instead, and then indulging in whatever other machines I can fit into the time.  The reason for this is because of my recumbent bicycle at home, which I use the other three days of the week.  At this point, I've set a minimum of 15 minutes for each session, but I may increase that as I find better ways to incorporate it into my life.  To date, most of my sessions have been well in excess of that, but some days my brain just seems to panic and flail more than others, so being able to say, "It's just 15 minutes.  Look, I'm already 5 minutes in.  This is doable," is very helpful.

I know I'd be better off doing a minimum of 30 minutes, 6 days a week, but I feel like if I try to overdo it, the exercise bike will end up gathering dust, as all too many of them do.  $150 is too much money to spend on something that's just going to gather dust, in my opinion. 

Coming up: moving stresses!  Yayyy...

Monday, February 12, 2018

Reading the Research: Why Autistic People Might Be Less Social

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 two theories regarding why autistic children tend to be less socially inclined than their neurotypical peers, and adds in a piece of current research that combines those two theories.

The first theory is one I've actually mentioned in this blog before, more than once.  It's called the Intense World theory, and it posits that autistic people withdraw from social situations because we're overwhelmed by the sheer amount of sensory input.  When the very light itself stabs you, the noises around you startle you constantly, smells worm their way into my nose and provoke blinding headaches, and even the touch of your loved ones hurts... well, suffice it to say you're not going to do very well outside of very safe areas.

The second theory is newer to me, but makes sense.  Called the social motivation hypothesis, it suggests that autistic people don't get the dopamine chemical boost from interacting with people that neurotypical people do.  Basically, most people feel good after talking to someone (assuming the conversation went well), and autistic people may not.  So while most people have that automatic reward for interacting with others, autistic people may not, and as such, don't opt to do so as often as "normal."

The article comments that these theories have been considering "competing."  I can't see why, frankly.  A lot of things in life are caused by multiple factors, not just one... so I don't know why there would have to be just one reason for autistic people to be less social than neurotypical people.  But anyway, the article suggests these theories might work in tandem, and the research attached shows evidence of just that.  The tested autistic children displayed less social reward response, and heightened responses to social feedback, which they're saying indicates sensory-responsiveness.

Speaking on a personal note, if I engage with small talk/"mindless" chatter with people in the grocery store or whatever, I think I do get the dopamine burst now, but didn't used to.  But, and this is important, that dopamine burst is almost immediately balanced out by a rush of intense anxiety.  Sounds become louder, my brain shifts into high gear, and I start panicking about anything I said that might've been taken the wrong way.  Needless to say, it's not fun at all.  Obviously I'm not going to stop talking to random people when it's warranted, but I'm disinclined to just... chatter away at people.

Interestingly, the study showed a phenomenon something like that rush of intense anxiety after positive social feedback in the more heavily affected ASD kids.   Which makes me wonder where precisely I fall on the spectrum, after all. 

Friday, February 9, 2018

Book Review: The Aspie's Girl's Guide to Being Safe with Men

 The Aspie Girl's Guide to Being Safe with Men: The Unwritten Safety Rules No-one is Telling You, by Debi Brown, is a book of rules for the intended subject, and only the intended subject, as written by one autistic woman.

I found the scope of this book very narrow, all thing considered, and perhaps more suited for 20 years ago than now.  Today's understanding of sexuality and gender identity allow for a much broader range of relationships than "cis straight girl with cis straight guy," which is all this book really addresses.  There is no discussion whatsoever about same sex relationships, trans people, or genderfluidity.  The lattermost is relatively common in autistic people, apparently, with myself as the obvious example.  I am agender, meaning I would like you to take your gender stereotypes and toss them in a fire, far away from me, thanks.  Some people feel they have traits of both genders, or are more one gender than the other depending on the day. 

So, all of this is skipped.  This book is intently focused on abuse-prevention in the most statistically common relationship or sexual situation.  The language choice is simplistic and written for literal-minded people, which is excellent given the intended audience.  Not every autistic woman needs these accommodations, naturally, but it doesn't hurt.  Particularly since the subject matter makes most people uncomfortable to talk about, even if it's their job (looking at you, guidance counselors and sex ed teachers...).  The writer tends to start technical and then get into more detail, and list "rules" and priorities for those rules, which I think is good for the kind of black and white thinking autistic people are prone to.

One good point about this book is that it includes a discussion of boundaries.  This subject is, as far as I know, not one that was ever discussed with me until last year.  I was expected to simply learn this information on my own, somehow.  (By the way, the person who helpfully discussed this with me?  She's gay, knowledgeable, and awesome.)  So the author here defines boundaries, and then lists some basic ones, including ones I hadn't really thought about as specifically boundaries.  This transitions into how to say no, why to say no, and how to handle hearing "no" from someone else.

The author does take a lot of time in this book to talk about herself, which is why I'm able to safely say that she has the opposite problem that I do.  On the spectrum of independence, with "overdependent" on one end and "refuses help from anyone or anything" on the other, the author falls closer to "overdependent" and I fall more near "refuses help from anyone or anything."  The healthiest place for people is right in the middle of that spectrum.  No one is truly independent in truth, not the richest person in the world nor the poorest hermit.  The tools we use, the food we eat, the clothes we wear, even the work we do, all rely on other people.  But as a rule, this author seems to prefer other people swoop in and solve her problems all the time, whereas I tend to prefer to solve my problems myself regardless of how much quicker or better it would be for someone else to do it.

I suspect the author's end of the spectrum is more common in disability circles.  Part of the reason I'm relatively anti-getting help is because I learned very young that no one would help me anyway.  So it doesn't really occur to me to ask for help, or include other people.  But most people with disabilities know about their disabilities and are given help whether they want it or not, which seems, in my experience, to lead to relying on that help.  Again, this is not necessarily a bad thing, since everyone is dependent on others.  It's just a problem if it becomes overdependence.  The author talks about her struggles with overdependence a bit, along with her emotional struggles regarding sexual abuse.

Which is the last thing I'd like to point out about this book, in fact.  While overall I found this book a little too simplistic and limited for everyday life, it does make a point of walking you through some common reactions to sexual abuse, how to work through them, the complicating factors, what things you should do if you've been raped and what to expect with the aftermath, etc. 


Read This Book If

You're autistic and biologically (or trans-) female, especially if you've had a more sheltered life and/or the people around you haven't really wanted to discuss sex, sexuality, and how to be safe when dating men.  This book is rather restricted in focus, which I think is a pity given the incredible amount of diversity in relationships there is now... but as far as its focus goes, it does a decent enough job.  I have yet to find a better resource for how autistic people deal with abuse, how to manage and set boundaries, and how to describe sex in relatively clear, understandable language. 

Wednesday, February 7, 2018

Legwork and Life, week of 2/7/18

House Hunting

The closing was finally scheduled, and there seems to be no further complications as of yet... save that the closing was scheduled at an office that's over an hour away from where any of us live.  So Chris is going to have to take the morning off, so we can drive two hours in a day, just to sign some paperwork in person.  This seems completely absurd to me.  I live near a city, and the closest place is toward the rural side of the state, away from my city, the capital, and most forms of civilization?  Ridiculous.

Needless to say, I'm not looking forward to the trip, but it would, I suppose, be the last wrinkle with having to deal with the bank and such.  There's still the "we need to hire a moving company for the heaviest stuff" and the actual moving process, which I don't expect to be any fun, but at least that'll be more familiar than this is...

Runaway Tooth Story

This previous weekend was kind of horrid, in large part because I effectively lost part of a tooth down the sink...  

To be precise, I lost a crown off my lower back molar.  I have genetically weak teeth, and on top of that, brushing my teeth is a hideous experience, so when I lived in a place without fluoride in the water for a few years, the rot-fairy came calling, and dental-related suffering ensued through high school and college.  This crown was one such result.  I have since improved in my ability to tolerate taking care of my teeth, and added an electric toothbrush to my cleaning routine, but that won't make the crown go away, naturally.

Apparently, flossing will make it go away, though!  Or at least go flying.  I was flossing my back teeth when it popped out and bounced around the sink.  I lost sight of it, and promptly assumed it had gone down the drain, since that's where I'd last seen it.  Needless to say, I was upset...  So I woke my poor spouse, who had been sleeping quite peacefully, and we went to get a specialty wrench to take the sink apart so we could locate the silly crown.  

It turns out that it's not that hard to take apart a sink, but the parts you don't normally look at can get really revolting in very short order.  We'd only been living in this place for less than 4 years, and there was hair and a soil-y substance and rot... It was disgusting.  After cleaning out the pipe and sink parts, we couldn't find my crown, either... so I got started on cleaning up the bathroom after all that... and found the stupid crown in the overflow sink catch, mostly clean.  

We'd bought some temporary dental adhesive while we were out for the wrench, so after I scrubbed the crown, washed it off, and disinfected it, I was able to put it back in... crookedly.  It took me an hour or so to realize I'd messed up, but when I tried to get it back out, I couldn't.  Which is how we ended up buying me saltwater taffy to try to dislodge it...  

Turns out, for anyone curious, saltwater taffy is stickiest when it's just out of the wrapper.  So you pop it into your mouth directly onto the spot you're trying to get stuck, then moosh your mouth shut and then open.  I've never tried to purposely lose a tooth or something like that before, but if you ever need to, this is one way how.

I got it back out again, cleaned the glue out of it, and reapplied more glue, this time making sure I put it in right.  I definitely put too much glue in, because the crown was too high when I was done, but Monday afternoon, when the dentist was able to see me, he complimented my work, saying it was the best he'd ever seen, and that maybe I should consider a job in dentistry.  I assume he was kidding, but I wisely didn't tell him that I'd be miserable doing his job...  

So anyway, I got the tooth fixed on Monday, and after a few hours of suffering, my mouth seems to be back to normal.  Found out two things, though.  First, my dentist office has new lights, which do such a good job curing the glue that they also "cook" the gums if the users aren't careful.  So I've been introduced to a new form of pain.  I didn't really register it as heat, but it was definitely painful.  

The second is that the temporary dental adhesive is full of gross crap, and I felt like garbage after ingesting some of it.  I checked the package for the ingredients afterwards... two forms of aluminum and petroleum jelly, along with various other things.  The ill effects lasted several hours, and made me wonder whether I was poisoning myself on accident...   I seem to be more or less okay now, though, so maybe I haven't damaged myself permanently.  

I am, however, planning on buying a big container of Draino (drain clog cleaner) and pouring it down the bathroom sink, possibly while chanting something suitable for exorcising demons.  I wasn't expecting such a horrifying mess inside my nice, clean-looking sink, and the revealed truth has made me rather ill.  Death by harsh chemicals seems like a fitting consequence for my trauma.  

Next week we'll close on the house, and after that, start planning to bid this apartment good riddance!

Monday, February 5, 2018

Reading the Research: Diagnosing Autism via Movement

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

Today's article suggests an alternative form of diagnosis for autism, from a rather unusual angle: movement.  Using high speed sensors, the scientists examined 70 volunteers as they touched objects on a screen.  It turned out that participants who had autism diagnoses exhibited a greater amount of fluctuations in speed when reaching to the screen, to the point where the movement score was predictive of the diagnosis, and vice versa, right down to the more heavily affected autistic ("lower-functioning") people having the most extreme scores.  This is the second study of this kind this team has done, according to the article, and the previous study also had promising results.

For the confused, these results kind of make sense in the "autism is a brain difference" way of looking at things.  If your brain areas are connected in unusual ways, your movements are going to be more uncoordinated and possibly less controlled than someone whose brain is more normally-developing.  In basic areas of functioning, this may not matter.  For example, I can fold origami, and did so quite a bit in preparation for my wedding.  I can cook with sharp knives, without chopping off my fingers (though admittedly I am VERY careful with knives I know are sharp).  I can move myself up and down sets of stairs and through hallways without bashing my elbows on things (usually...).

But growing up, I was fairly uncoordinated when it came to gym class, which did not endear me to my peers when everyone was focused on winning.  And, truth be told, it took me a lot of tries to learn how to fold origami, and to make chainmail jewelry.  More, I think, than most people would need, if the people I've taught are any indication.  I feel like, as a rule, I tend to take greater care with my fine motor movements (like folding origami, chopping vegetables, pushing buttons) than most people do.  If that's true, and this study is accurate, that might explain a lot.  My extra care in these movements would just be one more remediation of a weakness that autism has given me.

On a different note, it's been noted in various medically-minded textbooks that unusual walking patterns (gait) or clumsiness in movements is often found in autistic people.  I can't say for sure how diagnostic such a thing is, but I do know I walk oddly, with my steps being too long.  If I'm doing very poorly that day, I tend to "clunk" or become less graceful, too.  It's like I no longer have the energy to expend trying to walk gracefully

Then, too, I don't know about you, but I have known people I could identify by how they walked.  A certain amount of leaning forward, a way of lurching to one side, a jerkiness to the steps, perhaps.  This sort of thing is gross (major) body movement, rather than the fine (and almost imperceptible) movement these scientists were testing for... but if I can notice such a thing, then perhaps this same concept does scale all the way down to the fine motor movements. It's a promising, and possibly very fruitful, line of inquiry. 

I'd be curious to know whether the scoring system they're using for this study had any interesting results with other populations, like depressed people, intellectual disabilities, or ADHD.  Any tests that would result from something like this would be a great deal less subjective than current assessments for autism.  Because we don't really know what causes autism, there are no blood tests, genetic screenings, or any other form of objective medical test.  Something like this, if it can be replicated and the results hold true, could be a very quick, objective measure of whether a person is autistic.  That would save a bundle of money in short order, as it is currently very expensive to test for autism.  It requires a well-trained professional, specific expensive tests, and the time to administer them.  Something like this would require only a high speed camera and a computer program.

Friday, February 2, 2018

Book Review: The Ultimate Guide to Sex and Disability

(Note: obvious title is obvious- this post will not be "family-friendly" or safe for work.  It is, however, a very important subject and a part of being human, so it needs to be addressed.)

The Ultimate Guide to Sex and Disability: For All of Us Who Live with Disabilities, Chronic Pain, and Illness, by Miriam Kaufman, Cory Silverberg, and Fran Odette is a reference volume of over 300 pages.  It contains an entire education's worth of sex ed, from myths (chapter 1) to philosophy (chapters 1, 2, 3, and 10), to anatomy and how-tos (chapters 5-9), to safe sex and identifying sexual violence (chapters 4, 12, and 13).  Each chapter is accompanied by quotes from various people with disabilities talking about their experiences.  I don't think I've ever come across such a complete, thoughtful, positive treatment of the subject, particularly when it comes to people with disabilities.  Needless to say, I hope, I consider this book a fantastic resource for any person, especially given the rather lacking sex ed courses I myself went through. 

Please note that this book is written in broad brush strokes, in hopes of being useful to as many kinds of people with disabilities as possible.  It is not, therefore, autism-specific, though at least one of the quotes from people with disabilities was autistic.  Several chapters include sections of specific things to keep in mind for physical disabilities, or chronic fatigue, or other impairments.  There's less emphasis on mental and emotional disabilities or differences.  But, admittedly, it's harder to make broad recommendations for such a diverse group.  They do, at least, have a paragraph here and there about hypersensitivity to touch, which is often applicable to autistic people.

Something important to mention before I go much further, is that one of the first myths this book dispels is the "people with disabilities and chronic illnesses are not sexual" myth.  I have never personally suffered from this myth, but I've always "seemed" normal, so that's probably why.  I do think the authors are right on target with this, though, that people in wheelchairs or who have other obvious disabilities are assumed to be like children, despite having the brains, temperaments, bodies, and libidos of an adult.  This myth is obviously ridiculous when you look at it too hard, but I don't think most people do, because sex is assumed to be only for the young, healthy, and beautiful in US culture.  Never mind that the human species would have died out if that was actually the case...

For me, one of the most important chapters in the book was Chapter 4, which is on communication.  I married my spouse last year, and we have since done some exploration into our sexualities now that it's socially acceptable to do so...  but a major hindrance has been my difficulty talking or thinking about the matter.  Society, especially the church, has preached loudly and clearly that sex should be considered a shameful thing that you're only allowed to do once you get married, and that solo sex (masturbation) is unacceptable.  Nobody wants to talk about it.  Sex ed is perfunctionary at best.  So most of what I've learned on the subject, I've been learning in my 20s.

This book could change all that.  Because, like anything else in a relationship, communication is key.  You need to be able to tell your partner what you like and what you want, and your partner needs to be able to tell you those things, too.  That's difficult for me, between my social conditioning, my sensory issues, and the fact that I become nonverbal when I'm sufficiently involved with sex things.  The end result has been a lot of frustration, overall.  This book has suggestions for that, though.  You can establish hand signals to indicate things like "Yes, this is good," "no, this isn't good," "do more of this," and "stop."

Another notable positive point about this book is that it is relatively LGBTQIA+ friendly.  While the book doesn't go out of its way to make a big deal about it, people of all kinds are represented in the quotations.  The book does simply refer to people who have vaginas as "women" and people who have penises as "men," but I think it probably does that for simplicity's sake, rather than any particular transphobic-ness.

The last thing I found interesting about this book is that it had a number of sections talking about how to deal with being a sexual person while institutionalized, or having attendants or support staff around a lot.  As a whole, the disability community is trying to move away from institutions, but they'll probably remain a (horrifying) thing for a while longer.  So the tips and suggestions in this book are very valuable for frustrated, dehumanized adults in institutions.

Before anyone gets too horrified about all this positivity and talking about sex, please do keep in mind that one of the reasons sexual abuse is such a powerful form of abuse is because no one wants to talk about it or hear about it.  This is particular true for disabled people, who are assumed to not be sexual, desirable, or competent in any fashion.  Look up the statistics for sexual abuse against disabled people, look me in the eye and tell me that isn't a problem.  The solution isn't hushing up the matter, it's making it safer to talk about, so everyone can be safer about sex, more educated about themselves and other people, and make better decisions.

But this book does go into the necessary precautions and safety tips for having a safe sex life: everything from abusers and allergies to STDs and birth control.  I was a bit disappointed that their birth control section really only covered condoms and female condoms, and there are over a dozen different options, with more being researched.  But admittedly, adding hormones to a person's already shaky biology can be a really bad plan, and a lot of the current birth control options are hormone-based.  Additionally, many of these options aren't very disability-friendly.  For people with physical disabilities, even condoms aren't all that accessible, with the exception of one brand of polyurethane condoms that they highlight (and I couldn't find online, sadly).

Read This Book If

You're a parent of a child with a disability, or a person with a disability.  Or heck, a person who might be open-minded enough to date someone with a disability.  This book is chocked full of excellent, sex-positive thoughts, suggestions, educational materials, and even guided exercises.  It combats the detrimental philosophies about disabled people, self-esteem, and sex, in a very enlightened, reasonable, and thoughtful way, while providing the information needed to be safe about this very important subject.  If you're a parent, this is all the stuff to teach your kids as they become old enough/developed enough to have a sex drive and manage themselves.  If you're a person with a disability, or dating someone with a disability, this book has great, thoughtful tips about ways to improve communication and sex, and even ways to try new things.  Don't miss this book.  I'll be adding it to my bookshelf. 

Worth Your Read: Choosing Supports While Keeping Autonomy

I'm not sure how often this will happen, but as I get more tied into the disability and autism community, I occasionally run into articles that I don't have a lot to say on, but I do think are very worth your time. 

This particular article is most relevant for parents and more heavily affected autistic people, as it's one autistic person's guide to sorting out support services by whether they give a crap about a basic human right: autonomy. Whether you're neurotypical or heavily-affected with many difficulties and disabilities, all people need some control over their lives. 

Disabled people are often assumed to be like children in that even with adult bodies, brains, and sex drives, they're expected to give up control of their lives and do whatever they're told, irrespective of their interests, ideas, hopes, and dreams.  This is cruel and thoughtless, and one of the reasons mental institutions tend to be evil relics of the past.  Even if the person isn't capable of managing their affairs entirely, it's imperative to keep as much control of their lives in their hands as possible.  Otherwise, psychology is quite clear about what happens to people (autistic or neurotypical) without control over their lives: we get fearful, depressed, miserable, angry, and even violent.  This is not what you want for yourself or your child, if you care at all about their happiness.

So, all that said, the guide, from Thinking Person's Guide to Autism.