Book Review: The Essential Guide to Asperger\’s Syndrome

Posted on by Realistic Autistic
The Essential Guide to Asperger\’s Syndrome: A parent\’s complete source of information and advice on raising a child with Aspeger\’s, by Eileen Bailey and Robert W. Montgomery, PhD, is one of those \”complete guide\” book ideas that are relatively common on my library\’s book shelves.  They\’re meant to be one-stop shopping for parents, especially parents that are new to the world of autism.  I have, at this point, probably read at least ten books written in this fashion. 

This one is better than most.  It\’s also a little more focused than most.  Specifically, it focuses on Asperger\’s Syndrome, or high-functioning autism.  The authors were aware this classification was going the way of the dinosaur with the current edition of the DSM, but released this book anyway in case it would help people.  I think it well might.

The first thing that set this book apart from other \”complete guide\” books for me was that it took the time to have a section for autistic women.  It has, in the past, been assumed that autism is mainly a masculine disability, because the diagnostic rate is so much higher for boys than it is for girls.  There\’s even a researcher out there that postulates that autism is a disorder that involves a \”hyper male mind,\” which is to say that all autistic people are more masculine and have more stereotypically \”male\” traits than the average person.

I, personally, do not find that line of research terribly accurate or helpful.  Neither does this book, because it takes more than ten pages to explain how autism can look different in girls as they grow up.  It also explains how symptoms can take longer to show up in girls with autism, sometimes only becoming obvious in preteen and teenage years.

Another section that set this book apart from most \”complete guide\” books I\’ve read is that it included a section on social skills, and how to teach them.  I found the section a little short and bare bones, but it seemed accurate enough for a start.  And it did catch most of the major pitfalls: taking turns in conversations, personal space, the problem with telling the absolute truth, avoiding being the \”rules enforcer,\” personal hygiene, etc.  I would\’ve liked to see a section on making small talk, as that was a major stumbling block for me, but perhaps the authors assumed the parents already knew how to handle that.

I was pleased, also, to see a section on bullying included.  Bullying is a huge problem when it comes to autistic people.  While most people experience a little bit of nastiness in middle school, autistic people are much more prone to being a favorite target, or even getting hit with it much younger, like me.  I was a favorite bullying target starting in either Kindergarten or 1st grade, I can\’t remember which, and that continued until my family moved away after 3rd grade.  I was easy to wind up, and predictable.  Also, no one would come to my defense.  And this all happened before cyber-bullying took the stage.  Today\’s kids have even more ways to be psychologically abused.  So unfortunately, the subject merits a lot of discussion and information. 

The book also includes a much-needed section on taking care of your family as a whole, making sure the siblings also get attention, self-care, and advice for handling family outings.  This is excellent, because these subjects tends to get ignored in the mess of handling the \”autism crisis.\”  Unfortunately, ignoring your own well-being for the sake of others eventually wears you out, which is counter-productive.  A sad, stressed out family makes for a sad, stressed-out autistic person.  Happily, I\’m starting to see more workshops and such available for siblings of special-needs people, and more for the parents as well. 

My last comment on the matter is that my original diagnosis was Asperger\’s Syndrome, rather than autism, as defined by the DSM-IVR.  So I did see a lot of myself in the pages of this book.  While I don\’t particularly think Asperger\’s Syndrome should be distinct from autism as a whole, I do think this book has an eye towards a specific section of the autism spectrum, and perhaps that section has mannerisms, tendencies, and behaviors in common.  The book would probably have been improved by having an actual autistic person review its contents, as I became miffed on a couple occasions by some apparent oversights in understanding our point of view, but it does fairly well even without that.

Read This Book If

You have an autistic child, especially one that blends better with their peers (\”high functioning\”), or seems to adhere to the \”Aspie\” stereotype.  Some of the advice in this book is fairly basic, but some of it I hadn\’t seen before.  All in all, I think the authors did a pretty good job putting this book together, and while it\’s certainly not everything you\’ll need to raise an autistic child, it\’s a pretty decent starting point. 

Reading the Research: Autism and a Lack of Surprise at the Unexpected.

Posted on by Realistic Autistic
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 deals with how neurotypical and autistic people react to sudden, unexpected changes.  The researchers had about 50 individuals, half autistic, half neurotypical, follow patterns of audible tones and images.  They made the patterns very predictable, right up until they didn\’t.  Then they measured the surprise reactions of the individuals. 

Apparently, the autistic people were less surprised in general when the patterns were broken, and the more heavily affected they were, the less surprised they were.  After running the data through computer processes, the researchers decided this meant the autistic people were expecting a more unpredictable (volatile) environment.  So when the environment was suddenly not following the previous patterns, they weren\’t as surprised.  The head researcher commented that if autistic people are expecting an unpredictable environment, they\’d tend to rely more on their senses and less on their prior understanding of patterns, and that might explain why sensory overload is so common.

I do kind of wonder if that researcher doesn\’t have it backwards.  Or at the very least, a two-way street, or a self-reinforcing cycle.  So, for example.  I have sound-sensitivity.  That means that sudden noises, something falling off a shelf, a child shrieking outside, unexpected fireworks, etc, tend to freak me out and hurt me.  My poor spouse trips over himself to try not to cause noises like that, because he knows that.  When I\’m at home, I can usually assume things won\’t fall off shelves, and there won\’t be fireworks… but there do seem to be children at many hours of the day, and sometimes things do fall or fireworks go off.  My environment, you see, is unpredictable, or volatile.  These things wouldn\’t bother other people, but they do bother me. 

In addition to that, my sensitivity isn\’t predictable.  A child shrieking won\’t necessarily bother me a lot some days, but other days I have to restrain myself from going out onto my porch and screaming at them to shut up.  Verbosely.  And very impolitely.  So not only is my environment volatile, it\’s unpredictably volatile.  So it seems silly to me to say, \”Oh, these autistic people aren\’t building their expectations properly, and that\’s why they\’re expecting a volatile environment.\”  I\’d be more inclined to say, \”the environment, as the autistic person sees it, is volatile, therefore they are less surprised by sudden changes.\”  I\’m sure there\’s still some decent research that could branch off that idea. 

I think the basic results, that autistic people are less surprised by the unexpected, are probably about right, though.  I don\’t react normally to sudden emergencies in traffic, and once, I dropped my laptop while I was chatting with an acquaintance.  He shouted in surprise at the sudden impending damage to the expensive machine.  I, on the other hand, went stone-faced, picked up my laptop, and kept talking while I examined it for damage.  He commented on how unusual that was, which is partly why I remember it. 

Legwork and Life, week of 9/5/17

Posted on by Realistic Autistic
Well, I feel tired and burnt out, which is the opposite of how you\’re supposed to feel after a weekend.  Especially a long weekend.  That\’s not very good, and I\’m not entirely sure what\’s going on… but I suspect I\’m going to be the last person to realize why, because that\’s how these things tend to work.  People really close to the problem usually have more trouble seeing it. 

My current mood and incredible lack of energy aside, my week wasn\’t terrible.  On Wednesday, I picked up my mother from the airport and spent some hours with her.  She was in town, along with an uncle and aunt, for some family event I wasn\’t involved in.  It was actually terrible timing, my period had just hit and I tend to be miserable the first couple days, but I rarely see my mother.  So I bucked up and we had a decent time.  Then there was dinner out with my grandmother and the visiting family.  It was, over all, a nice dinner.  The food was decent and my mother found something she could eat, which is tough for her on her specialized diet.  She even seemed to like it.

I did find out that I am, in fact, somewhat light sensitive given the right circumstances.  I mean, I knew I was sensitive when it came to the sun, but it turns out that a plain old flickery indoor light can drive me bonkers, if it\’s placed just right.  The overhead lights in our section of the restaurant kept flickering.  I kept count at one point, it was every 15-20 seconds.  For an hour.  All things considered, I think I handled it rather well.  But I did kind of want to tell them to just turn off the dratted things.  I don\’t think the rest of the group would have liked that much.  It\’s more pleasant to talk to people when you can see them, at least if you\’re neurotypical.

Most of the long weekend was spent at home, with Chris, discussing the future and dealing with things.  Chris just got a raise, which unfortunately was only enough to offset the cost of adding me to the insurance plan.  We\’re looking for other ways to save money, and will be taking a look at other options for car insurance and such soon.  But it\’s a tough subject to work with, and he\’s bummed about the situation.  It\’s pretty stupid, all in all, because his job and salary would be almost luxurious if he wasn\’t weighted down with so much college debt. 

Even stupider is that managing my various expenses is painful.  Between the supplements, chiropractic work, health insurance, and other necessities, it costs a depressingly large amount every month for me to even try to keep my life, sanity, etc, in balance.  That\’s the cost tallied before we even factor in the mental and emotional effort it takes for me to do my part.  And I\’m supposedly \”high functioning.\”  Ufff…  I spent a good chunk of this weekend being depressed about all that, but other than doing my best, there\’s really very little I can do about it.  There is no magic pill to make my difficulties go away.  It just stings more than a little to know I\’m \”high maintenance,\” especially when I feel like I achieve so little. 

Speaking of achieving things, I\’ve never been terrible comfortable with my Tuesday-Wednesday-Friday update schedule, as it seems unbalanced to me.  So I\’m going to swap it around starting next week to Monday (Reading the Research)-Wednesday (Legwork and Life)-Friday (Book Review/Musings/Topical).  Hopefully no one will mind.  I think it\’d be nice to start the week off with something interesting to chew on, plus those entries aren\’t difficult for me and I can have them ready ahead of time.  Which means not stressing on Sunday night when I\’m supposed to be relaxing.  Then everyone can read about my boring life on the most boring day of the week (sorry Wednesday, I hated you when I worked 9-5 jobs), and hopefully end the week with something interesting as well.  It\’s a relatively minor re-arrangement in all, I think, but it might help. 

Time, Spoons, and Energy

Posted on by Realistic Autistic
I wrote a blog post two years ago about Spoon Theory, which is a concept of limited energy to do things in daily life.  Recently, a friend linked me to an autistic blogger who wrote a similar, broader explanation of how much time it takes to be with people.  She titled it \”My Gift is Time.\”  I highly recommend you read it.

She talks about how many hours it takes to be prepared and decompress from one outing, and the numbers are high.  A dozen or more hours to go someplace new for a hobby.  At best, six hours prep/decompression to one hour of fun.  I\’ve never personally tried to ballpark the amount of time it takes me to gear up and calm down from activities… but I think that\’s because I tend to try to keep busy with other things, rather than taking notes about how bad I feel.  (I\’m not sure that\’s a fair assessment of what this author does to unwind after events, but I definitely try not to think about how stressful an event was lest it stress me out more.)

Spoon Theory, too, talks about spending limited energy on tasks and people. The author of Spoon Theory suffers from Lupus, which is a physical disability, an invisible but powerful disease where the body attacks itself.  Like the author of \”My Gift is Time,\” this author also makes careful count of how much effort an activity costs her.  She uses spoons as an easy-to-understand system for energy.  One spoon per activity, generally.

Hours and spoons, to count off time and effort.  Just like the last time I talked about Spoon Theory, I have no idea how to quantify the effort it costs me to spend time with people, go to new places, and do unfamiliar things.  It definitely costs me, and some days a lot more than others.  But I never seem to have a sense for how much energy (time, spoons, whatever) an activity is going to cost me, nor do I have any real sense for how much energy I start a day with. 

I\’ve made comparisons for this in the past to the gas gauge on my first car.  Though my current car follows suit, frankly, so maybe the designers are doing the \”it\’s not a bug, it\’s a feature\” mentality about car design in general.  Gas gauges, of course, go from \”full\” to \”empty.\”  Logically, when the tank is full, the gauge should read full, and when it\’s empty, it should read empty.  At half-full, it should read half-full.  Does this seem obvious to you?  It\’s apparently not to car designers.  When my car has 2/3s of a tank of gas, it reads that it\’s half-full.  When the needle points at \”empty\” it usually has at least three gallons of gas still in its 20 gallon gas tank. This is vastly counter-intuitive to me.  I\’m sure the car companies do it so people won\’t accidentally run out of gas, but it puzzles and annoys me.  I can\’t trust my gas gauge.  All it does is tell me that I need to plan on going to get more gas \”sometime soon.\” 

My mental and emotional gas gauge is somewhat the same, except that instead of starting at \”full\” and working its way slowly down, it starts at \”maybe okay?\” and stays there right until it swaps to \”not okay\” and, if circumstances prompt, \”VERY NOT OKAY, DROP WHATEVER YOU\’RE DOING AND GET OUT.\” (The last one is analogous to the car running entirely out of gas, and refusing to start/move.) Like the car\’s gas gauge pointing at \”empty,\” I can run on \”not okay\” for a very long time.  I rarely actually run out of gas, at least in part because I\’m very cautious about pushing my reserves. 

Life being what it is, though, I do have to push my reserves sometimes.  Recently I had some family in town.  I rarely see these particular family-people, because they live on the other side of the country.  No one\’s fault, just how these things shake out.  So even though I was tired, in lots of pain from female-organ cramps, and just wanted to curl up in bed and do nothing, I buckled up, changed into clothes suitable for wearing outside, and proceeded to spend upwards of five hours being social. 

This was worthwhile effort.  The outing was pleasant for a number of reasons.  But just like in the story of Spoon Theory, I had to borrow \”spoons\” (energy) from the day after, and from my reserves.  I tend to call it \”borrowing spoons from the ether\” because I have absolutely no idea how many spoons are in my reserves, I just have to pray there\’s enough to get me through the activity without needing to hide in a bathroom and cry, or leave early, or another of the various \”emergency coping\” mechanisms I\’ve had to resort to over the years. 

Perhaps in another two years, I\’ll have developed a proper system for rationing my energy, time, and sanity.  Perhaps I\’ll be able to adopt Spoon Theory properly, having discovered a method of counting my \”spoons.\”  Perhaps I\’ll develop a way to count hours of preparation and hours of recovery, like the author of \”My Gift is Time.\”  Or perhaps I\’ll opt for something a like more like video games, and invent a system with Energy Points, and give various activities a difficulty rating based on how hard they are.  Perhaps some days will be so bad, I\’ll decide that every activity costs me twice the energy points.  And maybe I\’ll have days so nice, activities will cost half the energy points. 

Maybe reading a book for pleasure could restore energy points, or going outside for a few minutes to sit quietly in the sun.  Or meditation might do it, if I ever manage to slow my mind down enough to benefit from it.  Two years is a long time by some measures.  Let\’s hope I can manage it.