book review

I should preface this review by noting that by now, I am very suspicious of anything that insists it\’s comprehensive or complete in regards to autism.  I\’ve gone over why the various factions in the autism world can\’t seem to stop arguing about autism, and have at least privately noted that if someone could manage to get them all to stop arguing and start listening, we could have a really decent conversation and maybe get a lot done.

That said, this book does take a good shot at covering many aspects of an autistic person\’s life.  Though admittedly, it seems more focused on the more heavily-affected, less blended section of the autistic population.  Most specifically, it seems focused on their parents.  I try to read such books with an open mind and an eye to figuring out ideas that might help me, but in this case, the book was almost entirely academic reading (ie: it had little personal bearing on my life).

The book is a compilation of essays, more or less, based on specific subjects in a person\’s life.  The authors seem to be, if not experts in their fields, at least notably thoughtful on their subjects.  Most of the contributors seemed to be parents or lettered people (ie: PHD, MA, MD, etc), rather than autistic people.  That\’s par for the course, particularly since this book is now six years old. They did include a piece from Temple Grandin, and another couple shorter pieces from an autistic man named Stephen Shore.

The subjects covered include things I\’ve never had to consider, such has how to deal with the police, firefighters, and hospitals.  There are sections for financial planning, for health issues, and for sex-related subjects (both sexuality and specifically boys\’ and girls\’ issues when dealing with autism). Because of the variety of authors, each section varied from indepth and helpful to \”here\’s stuff you should do.\”  The latter didn\’t seem terribly helpful, given the kinds of parents I tend to run across- harried, overworked, exhausted, and just trying to survive another day.

Still, at least as a spread of issues to know about and be aware of, it doesn\’t do too badly.  It skips the vaccine controversy almost entirely, along with most kinds of therapy I\’ve heard of for autism.  But education, finances, health and welfare, community, puberty, and communication are all covered.  For a book of less than 300 pages, that\’s impressive.

Read This Book If:

My snark aside, this is more or less what it says in the title, though I would definitely replace \”Social Skills\” with \”Life Skills.\”  It\’s not a social skill to exercise regularly, nor to eat properly, but both are included in this book.  Certainly these things are vastly important, and keeping healthy patterns of exercise and diet can be very helpful in doing your best in social situations.

The book is divided into chapters, each of which addresses a specific subject autistic people may have trouble with, such as good listening, the differences between friends and acquaintances, housing, and dating.  There are sections for marriage and parenting, a very cautious section for dealing with strangers, and even sections in the beginning to identify what precisely social and communication skills are and why they\’re important. 

The tone is factual, logical, and brief to a fault, sounding, frankly, like it was written by someone with autism, and peppered with short stories to help demonstrate the topic or make a point.  There is a lot of \”this is what you should do,\” and very little \”this is how you could do it.\”  I kind of felt like I was being lectured at while reading the book.  The tone and brevity is probably at least in part due to how much information needed to be covered, and also because autistic people vary pretty widely.  What works for one person won\’t for another.

I did find the statistics given in the book a little bleak.  Even presuming the statistics in question were factually accurate (not a given, if you know how easily statistics can be skewed), I didn\’t really appreciate learning that 80% of all marriages that have an Aspie partner fail.  I\’m about to be married, with the intention to do my best by Chris in the long haul, and I\’m not entering into the marriage because I think it\’s romantic or something, so I could do with a bit less negativity over here, particularly when the world already considers me subhuman.  And really overall, that\’s like telling someone they\’re probably just going to fail, so why bother trying?  And I thought the 50% failure rate on regular marriages was bad.  Ugh.

At least I have the confidence of knowing Chris and I have done our best to assure compatibility on several levels, rather than just shared interests, or emotional compatibility, or similar political views.  Any technologically savvy readers may appreciate this description of a deep relationship.  (By the way, that\’s an excellent comic, though it may require some patience and open-mindedness to get through.)

I found the book to be almost entirely review until the last chapter, which deals with various tools autistic people can use to help themselves and others.  The physical ones are sorted by tech level: everything from sticky notes to computer programs.  To my great amusement, this book is 8 years old, so its suggestions are maybe a wee bit out of date.  A lot of the suggestions given in this last chapter, I could manage with a smartphone.  Err… most of them, actually.  But it\’s good to have lower tech ideas, because while most people have smartphones these days, not everyone does.  And not only that, smartphones break.  It\’s best to have redundancies built into your life.

Other tools given in the final chapter include strategies for effective listening, a second option for eye contact if trying for the 85%/15% eye contact/non eye-contact rule is too anxiety-provoking, and strategies to smooth over miscommunications.  Some of these I\’d heard of, like To-Do lists.  Others were entirely new to me, like the alternative eye contact option I mentioned.

At the very end of the book, there are a series of self-evaluations, each of which is referenced in the chapter that corresponds to its subject.  I didn\’t do the assessments, but apparently someone prior to me did, as several of them were filled out.  Of all the parts of the book, I wonder the most about this one.  Self-assessments are only as useful as the honesty and observational skills of the person taking them.  I tend to think well of myself in those areas, but that doesn\’t necessarily mean every given person on the spectrum will, particularly if they also suffer from depression, anxiety, or other life-complicating disabilities.

Read This Book If:

First of all, this is a workbook.  It has lots of places where you\’re supposed to fill in your own answers or draw pictures.  I never got libraries having workbooks, because the rule is pretty strict with those: you do not draw in or mark up library books.  The simultaneous urgings to do and don\’t draw in the workbook annoyed me, and left me feeling uncomfortable as I read through this book.  I suppose a solution would be to photocopy every page in the book, then give the child the copies to work on.  Or perhaps one could say that this is a copy for adults to review, before buying a copy for a kid on the spectrum.  In any case, not the traditional use of a workbook. Also not really the book\’s fault.

The focus of the book appears to be getting young kids to think about emotions and social rules, as well as giving them basic guidelines (people like to talk about things they\’re interested in, taking turns in conversation, etc).  I liked some of the tools they presented, including mental constructs for calming oneself down, understanding the types of friendships you have, etc. 

The book includes various activities, including handicraft projects.  The first one caught my attention: a keychain with various colors on it to represent emotions, such that you can use it to say how you\’re feeling, including multiple colors for complicated emotions.  When I was little, I tried to use jewelry to do kind of the same thing, but the system was forgettable and not very portable, let alone useful to any adults I happened to be near.  It was really just meant to help me feel more in control of myself, and to sort out my emotions.  But it wasn\’t very successful. 

I was interested in the section that deals with competition, winners, and losers.  I feel like that\’s an area I never completely progressed in, and in truth, I don\’t really enjoy competitive things.  So Chris, my fiancee, and I mainly play cooperative games together, where it\’s us versus the game.  I\’m unsure if that counts as giving up on having fun with competitive games, or simply not bothering because I know it won\’t be fun.  My father very much enjoys competitive games, and we learned to play Monopoly (and lost regularly to him), but my brother and I both seem to prefer cooperative games. 

In any case, having good ways to win and lose spelled out to you is probably a good thing.  Almost all of what was in this book, I\’ve learned by myself, but I somehow think it wouldn\’t have hurt to have had it spelled out in front of me.  The same goes for the friendship levels (best friend, friend, acquaintance).  I got along without these things, but they make it easier, I think. 

Read/Use This Book If: 

It probably says something uncomplimentary about me that I keep taking offense to the various book titles I run across in the library.  But I mean, come on… how does that title not shriek \”Pinocchio\” at anyone?  Like the kid in question wasn\’t a real person until after he got therapy.

But if you read the book, that\’s really not at all what the parent-author is saying.  The \”real boy\” phrase is something the author\’s kid said, after a lot of therapy and exhaustive work.  So my ire is mostly unwarranted.  Mostly.  I realize unique titles are hard to find, but.  Uff.  There\’s an entire chapter devoted to talking about how autism isn\’t inherently awful and autistic people can be a huge asset to society.  Given that insight, you\’d think someone (maybe glaring at you, publishing company) would take more care with the title.

My not-entirely-deserved umbrage aside, this is the story of one family trying to get their son to thrive.  The mother-author is your guide through the trying, exhausting, and even heartbreaking months and years of early-intervention for her son.  The story is told matter-of-factly, not sparing the feelings or actions of the people in the story.  This is not a fairy tale story.  It ends happily, thankfully, but there are plenty of moments of despair, loss, fear, and dread.  There is blame and conflict alongside the joy and hope.  The marriage of the author and her husband is tested, repeatedly. I somehow doubt this book goes into every pitfall, trial, and unkind word that happened in this time period, and it seems to me like the author is a bit too perfect of a character in her recollection, but I can\’t say I\’d do any better if I wrote a memoir. 

Like many success stories, this one involves not one single effective therapy, but many.  This is most commonly the case with autism.  There is no single fix.  There is no magic pill.  Instead, you\’re left weaving together psychologists with ABA (applied behavioral analysis) with gluten-free casein-free diets with prescription drugs…  Even chiropractic, neurofeedback (oh hey that\’s me), and supplements.  Any of these fields on average, will swear that they and they alone have the key to helping you or your child, but in reality, it usually doesn\’t work that way. 

The author is an excellent writer, and I found it easy (if depressing, often) to follow the thread of the narrative and empathize with her trials.  I kind of got lost on the timeline of things, and if there was a recap or summary at the end, I missed it.  Best I can tell is that it\’s a story from birth to about age 6.  I somehow doubt the kid\’s story is over… he struggled hard to get as far as he did, as did his parents… but the difficulty level of his life is about to ramp up.  School gets tougher, emotional spectrums expand, societal pressures and expectations broaden, hormones hit… I didn\’t, as far as I know, struggle that hard at that age… but middle school and high school were all kinds of awful.

Read This Book If:

You know, I\’m pretty sure both my mother and my first school taught me not to judge books by their covers.   That said, it didn\’t take much education in psychology to know that people may be taught that maxim, but will absolutely ignore it immediately.  The saying is more meant to be applied in dealings with people, not physical books at a library, but the principle does apply.  I always envisioned the saying referring to the pictures and colors on the book cover.  Particularly after I learned that the modern author has about as much control as a reader in regards to the cover of their book.

But I should probably start applying the saying to book titles, too, because those also are sometimes determined by the publishing companies.  And also because of books like this one.  My first thought, upon reading the title of this book, was, \”Gee, people will do anything to avoid saying \’cure\’ in regards to autism, won\’t they.\”  Which I\’m afraid was rather unfair of me, to this book and its authors, at least in retrospect.  I\’m not yet convinced that the whole of the autism world isn\’t dancing around the word like it\’s a Nazi comparison in an Internet debate, but this book, at least, explains itself quickly.  \”Un-Prescription\” is not meant in the sense of \”undiagnosing\” or \”curing\” someone with autism.  It\’s meant in the sense of propping up the body\’s own systems using \”natural\” supports.  I put \”natural\” in quotes because while prescription medication is hardly natural, shoveling helpful bacteria down your throat is also not terribly natural either.  There is, however, a body of evidence supporting probiotics, so, y\’know.

This book is divided into two parts: theory and practice.  Theory covers chronic pain and problems, organizing your data, probiotics, enzymes, and antimicrobial agents.  Each section comes with footnotes and a body of scientific studies, which can be found at the end of the book.  You check off your child\’s particular problems, if the section applies at all, and come up with a \”to do\” list of sorts custom made for your child.  I hadn\’t heard of either enzymes or antimicrobial agents being treatment options in autism, so that alone was kind of interesting.

More interesting to me though, was the explanation of why gluten-free/casein-free diets can help autistic people.  Actually, it was downright horrifying to read.  In brief: the idea that incomplete digestion of gluten and casein (dairy) can leave proteins (peptides) that closely resemble morphine.  Normally, this wouldn\’t be an issue because the brain is protected from the bloodstream and digestive tract by a barrier.  But if you add in leaky gut syndrome, you get, well… leakage.  So morphine-like substances affecting the brain. Remove the gluten and casein, or as this book suggests, take enzymes to aid in digestion of gluten and casein, and you eliminate the digestion problem, and the morphine-like substance.

So, uh, at least according to the authors\’ experiences, some bad behavior and suffering in kids with autism is caused by opiates.  As I mentioned, I found the concept absolutely horrifying.  Probably because I learned some of the effects of opiates in my various school anti-drug campaigns and my psychology education.  Morphine is used for controlling pain, but at least in popular culture, it has the side effect of making you not feel or care about anything.  Given that I don\’t generally recognize fun when it\’s dancing in front of me wearing a clown suit, I kind of wonder if the opiate effect applies to my case, too. 

I spoke with my LENS-doctor (and supplements-doctor) about feasibility of the theory, and she didn\’t even blink.  According to her, any person with leaky gut can have these effects, but people with autism show symptoms of it louder and more obviously than the general population.  Some schools of thought call us \”the canaries in the coal mine,\” regarding things like this.  But my doctor assured me that it wasn\’t simply an autism thing.  Schizophrenic people, and people with biopolar disorder, also show signs of increased suffering from this awful quirk of biology.

So that\’s a thing, apparently.  The book\’s solution was twofold: the first is obvious, transitioning to a gluten-free casein-free diet.  The second, which is easier to start but should transition in the first, is enzymes.  My fiancee, Chris, is lactose-intolerant.  He doesn\’t naturally produce enough lactase, the enzyme that digests dairy, to digest say, a glass of milk.  So we mainly avoid feeding him dairy-heavy products.  But if Chris needs to drink a glass of milk, or say, eat ice cream or some other dairy product, there\’s an option.  He can chew up a lactase tablet with his first bite of food, swallow it, and then for a short time, his body will digest the dairy normally.

The concept behind these enzymes for gluten and casein seems more or less the same to my eyes.  The authors actually recommend those enzymes, but also a broad-spectrum set of enzymes to help with digestion in general.  Every person\’s biology is different, and some people only need a couple for a short time, while others may be using enzymes for the rest of their lives in addition to having a GFCF (gluten-free casein-free) diet.

After the wedding and honeymoon, I\’m going to start on the enzymes under the care of my LENS-doctor, to see what happens.  Going casein-free would be easier than going gluten-free, but depending on how much change I see, I might end up doing both. 

The remainder of the book was practice: how to build these theories into your child\’s life.  Calendars, tips for keeping the supplements, probiotics, enzymes, and special diets organized and regular, even recommendations for supplement companies, smartphone apps, and other useful tools.  At the very back of the book is the science: 20+ pages of citations. 

The tone of the book is friendly, optimistic, and helpful, and the advice generally seems consistent.  One of the major emphases of the book is to treat the underlying disorder, rather than simply slapping a bandaid on the symptoms.  For example, some people on the spectrum have constipation.  A normal schedule for pooping is once a day, but sometimes these kids don\’t poop except once a week or so.  In many cases, the book says, the doctors prescribe laxatives to get things moving.  But that only treats the problem, not the cause.  The book purports to treat the cause, so the problem won\’t need to be treated.

This kind of focus is consistent with what my LENS-doctor preaches and does: treat the cause(s) of the problem, and the problem should cease to be. It also makes logical sense, at least to me.

Read This Book If:

(cough)

Anyway, I took a break from the instructional and educational books I mainly seem to bring home, to pick up this book: Born on a Blue Day: Inside the Extraordinary Mind of an Autistic Savant, by Daniel Tammet.  The cover immediately threw me for a loop by portraying a blue sky, when in fact the author explains the blueness of the day had nothing to do with the weather, and everything to do with how he thinks about numbers and days.  Mr. Tammet has synesthesia, or in layman\’s terms, some of his senses are mixed together.  He sees numbers as colors, textures, shapes, and motions, to give you a starting idea.

It only gets more interesting from there.  I won\’t go into too much detail in hopes that you\’ll read the whole book. It\’s a memoir, so it covers Mr. Tammet\’s life from birth to current time, where he has a job, a spouse, stability, and a good social life.  His life, as the title suggests, has been extraordinary.  He was the sort of baby that quite literally cried all the time, so while he eventually achieved many measures of success, the journey was hardly a cakewalk for him or his parents.  The story is told from the author\’s point of view, in a matter-of-fact and direct tone I found easy to read and comprehend.

As with most of these life stories, I found myself drawing parallels between my life and the author\’s.  Though I was born nearly a decade after the author, much nearer to the advent of Asperger\’s Syndrome as a publicly understood concept, both he and I suffered from lack of understanding.  But, we also benefited.  There is, in the nobler sort of human being, a tendency to shrug off differences that one does not understand.  Not ignore them or pretend they don\’t exist, but simply coexist with and accept them as part of that person and part of life.  It seems to me that the people most important in Mr. Tammet\’s life were mainly of this nobler type of humanity.  With those kinds of people, you don\’t need to explain away your unusual behaviors, or feel like you have to apologize for existing, you can simply exist.

Another thing I noticed is that the author seems to have avoided contracting depression.  Anxiety he has, when his routines are disrupted or life isn\’t being predictable, but he doesn\’t describe it as the constant presence I tend to think of mine as.  And while his parents certainly had their difficulties, which he describes non-judgmentally, he himself does not describe any depressive behavior.  For that reason, and others, I\’m kind of envious of him.  I\’m sure his success in life thus far also plays into this, but perhaps I shouldn\’t whinge too much, I\’m not his age yet.  I guess I still have time to succeed. 

The other major envy-inducing reason is his phenomenal grasp of languages.  This is a man who learns languages for fun.  I took German in middle school, Latin in high school, and Japanese in high school and college, and while I tried hard and liked learning the culture, I never managed anything close to fluency.  I don\’t know if it\’s blamable on the anxiety, which kind of undercuts anything practice-related with avoidance behavior, or if I\’m simply just not good at languages in general.  My command of written English is excellent, but some days I honestly struggle to put sentences together verbally.  Meanwhile Mr. Tammet has so many cultures and ideas and people available to him.  One of the things he did was travel to Lithuania to volunteer there, teaching English, and I sat and envied that experience.  Not only did he pick up the language, he also made a few friends there, one of which he still speaks of keeping in touch with.  He had real, good, life-changing experiences.

I miss those kinds of experiences, I guess.  The inside of my apartment is very comforting and safe, and the outside world is very hostile and scary and unpleasant, but I did once take a trip to Greece via a college program.  It was kind of an extensive experience.  We were required to pass a test on the culture of Greece to even go, and once there we had to present a topical report on an aspect of the country.  Everything from mythology to politics to history.  In addition, and my most favorite aspect of the trip, our guide was native, and actually liked what she was doing.  My crowning success of that trip was not my report, or getting to study how other college students act in other countries, but learning how to say \”hello,\” \”please/excuse me,\” \”thank you,\” and \”bless you,\” in modern Greek, without more than a trace of an accent.  Our guide made us practice, and I applied myself to trying to say the words exactly as she did.

I suppose it helped that she was also one of those nobler people that didn\’t mind oddities, because I followed in her wake and listened to everything she had to say.  In my defense, she had tons of interesting things to say, and I had many questions.  But she apparently didn\’t mind, and took to calling me her shadow.  If it weren\’t for the fact that travel is very expensive, I might try to do similar trips, either through the college or through other means.  I find it anxiety-provoking to not be able to understand what\’s being said around me, and not be able to read signs, but with the right guide, I wouldn\’t feel like I need to care.

In any case, travel was only part of the author\’s life, albeit an important one.  I think, for purposes of making the story easier to read, and perhaps also by virtue of events being clearer in hindsight, that Mr. Tammet\’s life seems smoother and more predictable than mine ever has.  I\’ll bet dollars to donuts that wasn\’t the case as he was living it.  So perhaps I shouldn\’t feel the way I do, that I have no chance of living up to this sort of example.

But I guess that brings up the last part of the envy.  In one of the last sections of the book, Mr. Tammet describes meeting a fellow savant who shared his particularity for numbers.  They connected on a wavelength I have yet to manage with anyone.  As far as I know, I am not a savant.  I do not have specific \”special interests\” which I pursue with zeal beyond that of neurotypical ken.  I\’ve seen this in others with the autistic diagnosis, and it\’s often the key to their success: linking that special interest or singular talent into a program or job that they can do.

It makes for excellent stories.  Mr. Tammet started a company teaching languages over the Internet, which he does from home.  Other people love outdoors and animals, and so get jobs on farms where they can be around both those things.  And me?  I went into the world of autism thinking my command of English and writing, and my particular life experiences would make a difference, and… in the world of autism, I\’m one of actual dozens.  And many of those have books to their names.

I don\’t have a special interest, or a particular impressive talent for any subject.  I think if I ended up writing a book at this point, it wouldn\’t be called the title I\’d originally had in mind (Driving Cars Through Pudding), it\’d be called Head Down: A Guide to Trudging Through Life.  My singular defining attribute, so far as I can tell, is being too stubborn to quit.

But perhaps I should take those thoughts with a grain of salt, considering I am currently very tired, very grumpy, and very much in pain thanks to lady cramps. 

Read This Book If:  

Why now?  Well, my doctor introduced me to VAERS, otherwise known as the government\’s vaccine injury statistics database.  And to the fact that vaccine injuries are, in fact, a thing.  Vaccines are by nature a bunch of chemicals and substances not natural to our bodies; the whole point of them is to prod our systems into being immune to things they\’re not normally immune to.  So sometimes (rarely, thankfully) those things clash in ways they\’re not supposed to.  Bad things ensue, such as new allergies, seizures, massive changes in gut bacteria, etc. 

So while being aware of this, I was still pulling faces at the book, because at this point, I am so tired of hearing \”vaccines cause autism, avoid vaccines at all costs,\” that my gut reaction is to strangle the person speaking.  I get that autism is not a particularly desirable thing.  Really, I do.  I live with autism, it\’s not a party.  But the diseases they\’re vaccinating against are quite literally deadly.  Your saying, \”I\’m not vaccinating my kid because it might possibly make them autistic,\” is basically saying to me, \”I\’d rather my kid be dead and everyone around them be at risk of all these deadly diseases than them be autistic.\”  You\’re basically telling me, to my face, that my existence is worse than death.  Depending on how bad a mood I\’m in, my response may vary from studied silence to a careful explanation to an angry string of imprecations. 

Usually not the lattermost, thankfully. 

So in the name of at least trying to understand the hysteria of anti-vaxxers, I picked this book up from my library, and then promptly put off reading it until the day before this entry was due to be posted.  This is unfortunately in keeping with my habits of college, which were to put off studying for finals by doing big projects, and put off projects by doing homework.  Eventually I ran out of homework and projects, but that was how much I disliked studying.  And finals. 

I had a great deal of difficulty starting this book, suffice it to say.  The first chapter didn\’t help.  Jenny McCarthy is fairly well known in autism circles, and has been on a number of TV shows.  She invites you inside her skull for a few of those televised interviews, and the inside of her skull is a very dramatic, emotional place.  I didn\’t enjoy my time there.  I think maybe it was supposed to be inspirational or humanizing or something, but it just seemed overdone to me. 

Hopefully that doesn\’t make me a heartless wretch.  Being famous and on television, particularly after having such a difficult life and having no one believe you at first, would make a person a mite more emotional and stressed than your average person on the street.  So perhaps I shouldn\’t point too many fingers.  I did get tired of her restating her general position, though, and had to remind myself that she, like many people, considers \”autism\” everything that is wrong with their children as opposed to autism specifically being a brain issue and other problems like leaky gut and food allergies being comorbid. 

The rest of the book consists of apparently real stories of mother warriors, ie: the kind of mother that fiercely hopes and fights for her child.  This includes a single father warrior, despite the title of the book, which I thought was a good addition.   These stories are interspersed with how she learned of these people, and her comments and views on their stories.  With a single exception, all the stories are of little kids.  The sole exception is what I\’ve heard called an adult child.  The person has grown up, but is unable to leave home and have an independent life.  He was able to get a job thanks to his parents\’ connections, and does have friends and a social life, but it doesn\’t sound like living alone and other markers of independence are really on the table. 

The book concludes with a series of resources to help with teaching and raising your child, including links to Autism Speaks, which surprisingly Ms. McCarthy is not a big fan of.  But also to her pet organization and products.  I was pleasantly surprised to see these things relegated to the end of the book, and not interspersed throughout. 

Read this book if:  I can\’t in good conscience recommend reading this book without having a lot of background in literally every other definition of autism.  Jenny McCarthy, for all I can tell, does not consider me and people like me autistic, and boy howdy wouldn\’t that be nice if it was true.  

That said…If your kid is very heavily affected by autism, food allergies, seizures, etc, I would say this book and the people attached to it probably have some good ideas you can try.  If you have a kid like that and are fast tiring of hearing doctors tell you there\’s nothing to be done, read this book for an infusion of hope, because there\’s definitely several things to try, which are mentioned: gluten-free and casein-free diet, hyperbaric chamber therapy, and others.  I can\’t vouch for the scientific accuracy of the opinions expressed therein, since I\’ve never tried or researched many of them. 

But please oh please don\’t forget that I exist, am autistic, and have both agency and a marked dislike for being sidelined in a myopic rush to help \”the children.\”  There is much much more to this story than Jenny McCarthy spells out. 

This book can best be explained as a case study.  For those not familiar with the term, this book basically follows an autistic man and his family, as he grows from a small, clearly special ed child, to a much more well adjusted math teacher.  It starts when he goes to college, then jumps back to his life as a little kid, and finally explains how he became a teacher and the hurdles he had to jump. This sounds confusing, storywise, but it\’s actually done fairly well.  And possibly wisely; I\’m not sure if I\’d have the strength of focus to read the whole story chronologically.  I\’ve seen similar literary techniques before, in any case. 

The tone of the book varies between carefully neutral and supportively positive to my senses, which is well, because some of the contents are upsetting.  The man in question, pseudonym Michael, did not have a nice, quiet childhood.  For privacy\’s sake, all the names in the book are pseudonyms, and that\’s just as well, because the book goes into great detail about the family\’s successes and failures.  I was honestly kind of uncomfortable with the honesty, perhaps because some of it seemed a bit too close to home.  Which isn\’t to say the author should have done differently, merely that I didn\’t enjoy this book as much as I might have otherwise. 

So far, this book is unique in that it\’s a case study.  I\’m hoping this won\’t be the only such book I read, eventually, but as starts go, this one is excellent.  The author was not simply content to interview the autistic man and his family, but instead sought out teachers, colleagues, and friends, in what I can only imagine was a dizzying amount of work to put together. 

It\’s important, I think, to note that this book does not begin her story of Michael\’s life on a \”everything is terrible forever\” note and end it on a \”all is perfect forever\” note.  Even at the end of the book, where Michael has a steady job and people that appreciate him for who he is, all is not entirely well with his family.  Old injuries linger, and there\’s still lots of room for growth as a person for him. 

I spent an unhealthy amount of time drawing parallels between myself and Michael while reading this book, and being anxious and upset.  While I like to think I wasn\’t as much trouble as a child, I imagine I would need to ask my parents to be sure.  In any case, it did not help me enjoy the reading. 

Read this book if: You\’d like to read an unconventional success story, and aren\’t bothered by excessive honesty.  Heck, read this book if you\’re a parent of a little kid that doesn\’t speak yet, and need some hope.  Or if you\’re just interested in seeing one autistic life play out.  It\’s a good read for all those things.

These are basically explicit descriptions of situations or events in a person\’s life.  Usually ones that person might or is currently having trouble with.  For instance, one of the examples was for a child with sound sensitivity.  The child was likely to need to take a train to see his grandparents in another part of the country,  but his mother knew getting him to act calmly in so much noise and chaos was going to be a trial.  So she wrote a Social Story to introduce him to the train station and the trains.  Train stations are loud and sometimes chaotic, so she wrote out information about why and where they would be going in the train station, including pictures of the places in the station they would be.  The idea was to prepare him for going to the station, so that when they actually went to the train station, he wouldn\’t be so upset by the noise, chaos, and newness of everything.

Social Stories can be adapted to pretty much any situation under the sun.  While the book contained relatively few examples, the examples varied from elementary school situations to advice for break room situations at an adult job.  In short, they\’re a tool that you can just keep using as situations pop up.  While they\’re text-heavy, they needn\’t only be textwalls.  Pictures, symbols, and other shorthand that has meaning to the autistic person can be used in conjunction with the words, or instead of them.  The final idea is not merely to give instructions so that the autistic person understands what to do, but also to communicate the why of what they\’re doing. 

When I first saw this book on the shelf, I wasn\’t able to read the second part of the title, so I only read that it was called, \”Revealing the Hidden Social Code.\”  Between the thinness of the book and the name, I thought perhaps I\’d stumbled on a primer to acting normal (ie: not alarming the neurotypicals with your weirdness).  I\’m not really sure what would be in such a book, but this is definitely not that sort of book.  Rather, it\’s a primer for writing Social Stories.

I was initially bemused by the concept of Social Stories, though I had heard of them.  One of my friends used to work for the creator of the concept, Carol Gray.  I had not, however, gotten much introduction on them, so reading several of them proved interesting.  After reading a couple, I felt somewhat patronized.  The language is simple, and the concepts used for the examples are things I do without any undue trauma.  But of course, that reaction isn\’t terrible fair, since when I was little, I probably could have used these examples, or ones like them. 

My major problem, after all, was not my light, sound, and touch sensitivity, or even my shoddy detail vision processing, anxiety, and depression… it was my lack of understanding of social protocols.  I painstakingly learned these myself, but I imagine I was more of a trial to put up with than I might otherwise have been with some pointed instruction.  I already read a lot as a child, and while I much preferred fiction to nonfiction, I was also pragmatic enough that I suspect I could have been talked around to using these stories.

I suspect something like this could be still useful to this day, but even the advanced formats are rather restrictive to use on a prickly adult like myself.  I also have the capability to generalize based on past experiences, so short of, say, going to another country where all those expectations are vastly different, I\’m probably fine without them.

Read this book if: You\’re a parent, professional, or support staff for a literate person on the spectrum, and Social Stories seem like they might help accustom them to new and potentially upsetting situations.  If you\’re already using Social Stories and haven\’t read this book, I suspect you may find it helpful for improving the use and accessibility of your future and current Social Stories.