book review

Well.  This book was a trial.  Depressingly for me, I sensed that it had sufficient merit that I couldn\’t merely throw it aside in frustration and find a less energy-shredding book to review.  So after at least two weeks trying to finish reading it, I succeeded.   I\’m going to explain the bad bits first, then tell you why I bothered finishing this book and why it may still be worth your read despite the bad bits.

The First Third Or So, or \”Augh Whyyyyyyyy\”

First, and most importantly, this book\’s primary author is a medical doctor.  This is important because most understandings of autism consider it a strictly mental disability/difference.  It is, therefore, generally the realm of psychologists, psychiatrists, and other professionals that have an education in psychology.  The people that wrote this book?  Clearly either fell asleep during those classes or never took them in the first place.

That does not mean what they have to say is not relevant or correct… but it did nearly cause me to pop a vein in my forehead when they misrepresented no less than three major schools of thought in psychology, and in the same breath implied they were all basically the same (and useless).  As a person with a degree in psychology, I am regularly disgusted by abuses of psychology in advertising, in politics, and in company policies.  I tend to expect better of educated professionals.

In brief, for your edification or if you read this book.  Freudian psychology is based in understanding and delving into the subconscious, and involves things like dream interpretation, free-association, and psychoanalysis.  The man was a genius, but in a great many cases, he was also extremely misguided.  Very few of his techniques are used today for lack of effectiveness. 

Humanistic psychology, or what this book calls \”Be Yourself\” psychology, was introduced in the 60s. It is focused on the wholeness of the person, the inherent human drive towards self-actualization, and mindfulness.  It involves non-judgemental listening, guided insights on the part of both therapist and client, and a very positive outlook and mindset.

Equating the two schools of thought is flatly wrong, and insulting to both of them and psychology itself to boot.  That entire section, frankly, tastes like the authors\’ best attempts to push you away from psychology at any cost. There were many such breezy, poorly-researched thoughts in the first third of the book, and they drove me absolutely batty.

Another really awful bit was one of the very few citations in the book.  It\’s already somewhat problematic, these days, to write a book on a new theory in which you do not cite your sources… but these authors had the gall to actually cite Andrew Wakefield as a reliable source.  They even refer to him as \”Dr. Wakefield\” which he is not, any more.  He is not a doctor, for the exact same reason that his name is mud in most autism circles: he published a paper (and held a press conference) effectively saying that the MMR vaccine causes autism.  It was thereafter found that not only did his own research not support this conclusion, but also Wakefield had been paid money by prosecuting lawyers against the MMR vaccine.  In short, Wakefield was corrupt, abused his doctorate, and fabricated claims regarding his research.

The end result of all this was that Wakefield was stripped of his doctorate, his paper was redacted from the magazine that published it, and his research was shown, over and over, to be false.  Calling him \”Dr. Wakefield\” in this book, and implying that any of his work should be taken seriously, is not only incorrect, but flatly irresponsible.

Perhaps most insulting to me personally, this book and its authors are very fond of using phrasing like \”recovering from autism\” and \”reversing autism.\”  If you\’re at all familiar with the neurodiversity movement, you\’ll know immediately how utterly insulting such phraseology is.  They may as well have said \”cure autism\” and \”fix autism\” while they were at it, and taken the appropriately leveled firestorm that comes with such thoughtless word choice.

Like many books of this kind, this book is directed towards parents, in particular, parents who are desperate to \”make the autism go away.\”  The easiest mentality to adopt, upon being told one\’s child is autistic, is to blame the autism for everything about your kid that\’s not normal and is bad.  And then seek a cure for it, so you can have your dreams of your child\’s future back.  I get this.  But it is kind of insulting when someone essentially says, \”Oh God, I\’ll do anything to make my kid not like you.\”  I\’m definitely not a perfect person and I certainly have challenges, but I don\’t think anyone appreciates being looked upon with a mixture of horror and pity. 

Finally, the first third of so of this book, the \”stories of these kids and their treatments\” that are meant to resonate with parents reading the book… they either end before the child transitions to adulthood, or they end in death to promote the seriousness of seeking proper treatment.  And each and every one of these stories tastes like pop psychology and abuse of persuasion methods.  Had the whole book been like this, I would have been very inclined to burn the dratted thing rather than return it to the library…

The Not-Terrible Part of the Book

I should probably watch the movie referenced by this book\’s title, but given how poorly it describes autism and Asperger\’s, I\’ve kind of avoided it out of resentment.  That\’s probably foolish of me, since even an inaccurate portrayal served to publicize the diagnosis. 

Anyway, in actual regards to this book, it\’s more or less what it says on the tin: the story of a mother raising her autistic son.  Unlike many of these accounts, this particular account is honest and forthright in a manner I can only describe as \”brutal.\”  The author and her son struggled mightily with the family dynamic and behavior, and if you read this book, you will understand that struggle quite well.  The author does not sugar coat her descriptions of herself, intent on showing you how she made her decisions, why, and what worked and what didn\’t.  Such brutal honesty is very unusual in our culture, and not entirely pleasant to read in this case, since raising a child is a great, complicated affair with many ups and downs. 

Another major feature of this book is its organization.  There are subject-related chapters, and the book does sort of progress from birth to college age, but in truth, I would call the organization more \”stream of consciousness\” than I would anything else.  She makes efforts to keep you cognizant of where you are in the timeline, but skips back and forth between ages.  I may just be very bad at those kinds of jumps, but I found myself confused and lost more than once.  I don\’t particularly have a good solution to that, since trying to shoehorn everything that happened at age 10, age 12, age 15, etc, gets to be very stilted and invites a different kind of disorganization. 

Something that caught my attention was a section I can no longer locate in the book, where the author insists she isn\’t on the autism spectrum for various reasons, not the least of which is that she craves change in life sometimes and loves people.  I found her reasons somewhat flawed, and suspect that while she might not qualify for a diagnosis (since she seems to be running her life okay, thus no impairment to qualify), she is still on the autism spectrum.  Liking people and requiring change may not be entirely normal for the autism spectrum, but they aren\’t unheard of either.  Also, her most prominent example to compare from is her son, and autism can affect women differently than men.  There\’s an entire Reddit subforum devoted to that, and while I haven\’t yet done a ton of reading on the subject, I wouldn\’t be surprised if the author has sufficient numbers of traits to qualify for at least Honorary Autistic. 

The last thing I wanted to point out was a list of notes the author took from a useful lecture she attended on Asperger\’s.  If you have the same book I do here, it starts on page 222 and spills onto the next page.  There were many useful things, but three in specific I wanted to point out. 

\”For a person with Asperger\’s, the overriding priority may be to solve a problem rather than satisfy the social or emotional needs of others.\” 

This is often true.  This is definitely true with me.  I have learned to consider other peoples\’ social and emotional needs to also be problems, and therefore I try to take care to satisfy those things in addition to solving whatever other problems may be in evidence.  It\’s hard to put yourself in someone else\’s place, so I do a lot of thinking and data collection on a regular basis when those things are involved.

\”People with Asperger\’s must be taught that \’neurotypicals\’ need to be told they\’re loved and need to be hugged.\”

I don\’t recall having trouble with this, but Temple Grandin did, the author\’s son here did, and it\’s not an uncommon issue in various \”my life with autism\” books I\’ve read.  Between oversensitivity in skin and simply not viewing hugs as a comforting/intimate thing, it\’s not necessarily natural for us to give and receive hugs or repeat over and over that we love someone.  Teach this. 

\”Emotions often flood people with Asperger\’s, sort of like a panic attack, so they may overreact to negative experiences.\” 

I think I spent most of my teenage years angry and miserable, and didn\’t have much in the way of temper tantrums, but I\’m getting some unwanted experience with it now.  Why now, I have no idea.  Anyway, it really is like everything in your world fades out except the one thing that\’s making you angry/frustrated/upset.  Vastly unpleasant.  I\’m working on dealing with that in ways that aren\’t destructive or self-destructive, but it\’s very hard. 

Read This Book If

I\’m taking a brief break from the very text-heavy material that so often accompanies books regarding autism.  While this book is not, by any stretch of the imagination, a picture book, it is definitely more photo-heavy than any other book I\’ve ever seen on the subject.  The idea of this book is to capture the stories and pictures of families affected by the autism spectrum. 

In that goal, the author did admirably well.  Many parts of the spectrum are represented, from autistic people who will probably never blend well into society to those that may lead a near-normal life.  Perhaps more impressive to me was the fact that the author managed to have representatives of every racial minority in the US.  Part of that, I would guess, is due to their location.  California is a very densely populated state, so with more people in the area, there would be more chances at meeting a family in any given category and background. 

Still, I have no doubts that this book could easily have been the same as many \”our stories\” books, and been full of white people. It still would have sold plenty of copies.  So I really have to cheer for this author, because this kind of diversity of ethnicity and socio-economic background does not happen on accident, and we need more conscientiousness like this.  We also need more publicity for the stories of minority families, and this book is exactly that.

The textual stories of the book, accompanied by the pictures, served to convey pretty well where the parents were at, mentally and emotionally.  As an autistic person, I found myself occasionally peeved by their misunderstandings and some of the coping strategies they\’ve used to manage dealing with the stress of having an autistic child.  But it\’s not like I have children of my own, so I can\’t fault them too much.  All I can do is try to educate people, gently, that I am not diseased, that it is no one\’s fault that I am this way, that I am not a hopeless burden, that my life is not over since I\’m autistic…  You can hopefully see why I get tired of this sometimes.

I get prevented from snapping at parents like some of the ones featured here because they usually mean well and are trying their best to help their kids and themselves, but it\’s hard not to develop a kneejerk eyeroll reaction when I come across the same stuff over and over, particularly when it\’s dehumanizing. 

My annoyance aside, these folks are providing positive, hopeful stories, and that\’s a badly needed thing for parents who\’ve just received their child\’s diagnosis, or have been struggling to find the right services, help, and resources for their child. 

I guess I just wish there had been at least one entry that focused less on the parents and more on the person with autism.  For a book titled Autism Heroes to be only limited to the families of those people on the autism spectrum, it seems…  well, somewhat dismissive of us.  I think you\’d be hard pressed to find someone (other than Temple herself, perhaps) who wouldn\’t call Dr. Grandin a hero of autism.  And John Elder Robison.  And many, many other autism self-advocates.  Do they/we not count?  Do the professionals that really go out of their way to help us not count, too?

Given the tone of the book, I would guess that if asked, the author would say that self-advocates and professionals aren\’t really in the scope of the book.  The book is, following the title, strictly about families meeting the challenges of autism.  And I do understand that.  It\’s just… it\’s a far too common phenomenon in autism to focus very heavily on the children with autism, and forget that we grow up and become adults.  And we don\’t stay young, either, we age at just the same rate you do.  (Or faster, really, giving the effects of stress on the body…)  Yet no one likes to pay attention to that fact, or showcase us and our lives.  Or listen to us when we try to talk about it.

That\’s about my only complaint, I guess.  That in all the diversity and rich color this book portrays (irony somewhat implied, given all the pictures are in black-and-white), it seems to forget that it\’s not just families that are heroes of autism.  They wouldn\’t succeed without us also trying our best.  Heck, this book wouldn\’t exist without us.  And it\’s not just autistic children, but adults of all ages. 

Read This Book If

This book managed to annoy me right off the bat by starting off on a very negative note, first citing \”Rain Man,\” and then saying that many people on the autism spectrum have low IQ scores without mentioning how limited IQ is, as a measure of intelligence.  For anyone that doesn\’t already know… IQ, or Intelligence Quotient, is much less a measure of a person\’s intelligence and much more a measure of their ability to learn in a standard school setting, using regular teaching methods.  One might summarize a high IQ score as \”good book learning intelligence.\”

There are many kinds of intelligence, not the least of which is emotional intelligence.  Other kinds include street smarts/common sense, organizational ability, creative ability, and self-awareness.  Many of these are much more difficult to test on paper or in a controlled setting than book smarts, so they\’re often overlooked.  Which is unfortunate, because IQ is really only helpful in school.  After that, having a high IQ is pretty much just an ego booster and you need all those other kinds to succeed in life.  As such, it peeves me a great deal to see the author insisting that IQ is the division between so-called \”high functioning\” and \”low functioning\” people on the spectrum.

It also focuses very heavily on the negative aspects of autism, ie, our difficulties that should be addressed, without giving much thought to balancing all the negativity with positive things.  That\’s an understandable mentality as a parent, but it\’s brutal for the kid, always focusing on all your failures and weaknesses and inadequacies without ever mentioning the strengths we also have. 

But I shouldn\’t judge the book by its first chapter, probably…  (four hours later)  Nope I was right, it\’s pretty much like that all the way through.  Ugh.

I get it.  Really, I do.  You don\’t want your kid scaring off other kids with their oddnesses, because you want them to have friends and get as much social experience as possible.  You want us to have as normal of lives as possible.  So push, push, push against those weaknesses, keep them in mind at all times, coach your kid with strategies to address them.  Sure.

But y\’know what happens if you only do that?  You get depressed, resentful kids.  You get low self-esteem, and the mentality that the greatest indicator of our success as people is how well we interact socially.  Does that seem smart to you?  To define yourself by your weaknesses and your failures?  It shouldn\’t.  You need to balance all that negativity with positivity.  Celebrate and embrace the child\’s special interests.  Tell them you love them regardless of how well they\’re doing.  Try to see things from their perspective.  Enough of us already suffer from depression, don\’t make it worse.

My ranting aside here… as a party planning book, this book is adequate.  It has lots of activity suggestions and commentary on the particular age ranges and developmental levels of autism.  I\’m… not sure how accurate the latter things are, but it\’s not like I knew I had autism when I was those ages.

In any case, the suggestions seemed good, if overly focused on skill development rather than fun.  This book was written by a mother, and she\’s clearly consulted with a lot of other parents and probably professionals for creating this guidebook.

Read This Book If

In delightful contrast to the book about parties I read last week (and really, much general philosophy about autism) comes this book.

I should explain.  Autism, as a term, has nearly as many meanings as there are people that know about it.  But almost overwhelmingly, that meaning is negative.  \”Autism\” is often used to refer to all the weaknesses, disabilities, and flaws inherent in a person.  Digestive problems?  Must be the autism.  Social problems?  Must be the autism.  Short tempered?  Must be the autism.  Any positive traits are assumed to be part of the child despite the diagnosis.

The DSM has not, historically, helped in this regard.  As the starting point for most professionals\’ understandings of autism, it is undeniably negative.  Because a diagnosis generally requires serious problems in living and functioning, that\’s what the DSM focuses on.  And that negative focus then rubs off on any professionals using it.  Which in turn rubs off on parents and people with autism.

This book, then, is rather the opposite.  But not in a bad way.  I was watching for it, but the failing I see crop up in the neurodiversity movement – denying that autism is a disability – is only marginally represented here. Instead, the focus is on showing and empowering the humanity of autistic people.  Particularly the more poorly-blended members.

It was once (and still is, in places) insisted and believed that non-verbal autistic people are \”damaged\” people.  Not entirely human.  Unable to communicate, unable to have relationships, unable to participate in the human race.  Broken beyond hope of recovery.  This is false.  While this book neither denies nor ignores the difficulties inherent in being unable to communicate via words, it does vehemently insist that there are ways to communicate with such people, and be communicated to in return.  It insists that all behaviors have a purpose, and that very often that purpose is not \”to be defiant,\” or \”to get one\’s own way.\”

I\’ve heard already, of course, that behaviors commonly called \”stimming\” such as hand-flapping, rocking, spinning, etc, serve to calm and relax an overstimulated person.  They look odd, naturally, but serve an important purpose.  This book, though, is full of stories of much more obvious and confusing behaviors, what purpose they served, and how the people could be understood and their personhood recognized.

And this book focuses on the so called \”lower-functioning\” section of the spectrum, with stories that are everything from surprising to heartwarming.  Included are some insights into our minds, like how emotional memory affects us, why some people on the spectrum insist on things being the same all the time, and why the world is so frightening to us.  The author also offers his basic framework for understanding and working with people on the autism spectrum.

The emotional memory section reminded me of how my memory for music sometimes works.  I assign meanings, feelings, people, and memories to some songs, often based on the content of the song itself.  So when I hear those songs, I\’m immediately reminded of those things.  In one particular case, about half a year ago, I was exercising with a friend of mine at a gym.  Mid-conversation, the song \”Paradise\” by Coldplay popped onto the radio, and I lost the entire thread of conversation, stricken by accusatory connotations I see in the song.  I like Coldplay, as a rule, but that particular song suggests to me the philosophy of redefining happiness to whatever small things you have in reach, while life wrecks you, rather trying to improve your life and achieve your goals and dreams.  It\’s a sobering, and painful, philosophy to me  It\’s one I… mostly don\’t believe is a good idea, but when I hear this song I\’m reminded of the philosophy, and wonder if I\’m not deluding myself.

But perhaps what I found most striking about this book was how it addressed ABA (or Applied Behavioral Analysis).  I\’ve… never seen someone deconstruct the philosophy behind ABA in a book like this.  On the whole, ABA is viewed as one of the most effective and helpful therapies for autistic children.  There are definitely problems with it, like the fact that someone has to decide what \”normal\” is, and then enforce it.  And the fact that in the process of quantifying a behavior in that mindset, you usually don\’t ask whether it\’s beneficial or serves a purpose.  Which is one of the author\’s points.  I won\’t detail the rest in hopes that you\’ll read the book itself.

Read This Book If

Many of the books written by people on the autism spectrum come from a specific category of autism, which is the same one I\’m from: the so called \”high functioning\” or in my preference, \”better blended,\” section of the spectrum.  The people who, while definitely different than others, can still speak, write, and get along in this world without requiring intensive supports and services.  That isn\’t to say my life is easy, because it is not, thank you.  But I don\’t, as a rule, require a notepad and paper to communicate with other people, and or need watching to make sure I don\’t wander away, or constantly need a \”translator\” or helper to facilitate my existence in the world.

The vast majority of the people on the spectrum that do need those things… don\’t write books.  This person, obviously, does.  So right off, there\’s a good reason to read this book.  This author has experiences as an autistic person that I don\’t, and they\’re very important to understanding all aspects of the autism spectrum.

That said, this book is very different than my usual fare in other ways besides this.  Mr. Mukhopadhyay has the soul of a poet, and he writes in poetry and finely worked prose.  I\’m afraid that poetry and I never really saw eye to eye, and so much of his genius is lost on me.  But I do recognize it for what it is, and I highly recommend anyone with an appreciation for poetry read this book.

But enough digressions.  On to the actual content of the book!  This is a collection of stories about the author\’s life and growing up, written in first person.  It\’s particularly interesting reading because, in addition to what I\’ve named above, Mr. Mukhopadhyay is from India, and spent part of his life there and another part in the United States.  There are, as such, small glimpses into what life is like in India, which I found fascinating.

Each of these stories can be anywhere from a single page to a dozen pages long, and is sometimes interspersed with poems or poetry bits.  I\’m afraid the stories aren\’t perfectly chronologically ordered, which I found confusing, but the author does make efforts to inform the reader what age he was at the time.  So it\’s not like the stories skip from being 3 to being 12, and then go back to being 6.  It\’s more like a clump of stories falls in the 4-7 age range, and may skip around in that age range a bit.

I\’ve stressed that Mr. Mukhopadhyay and I have had very different lives.  This is true, but I did still have moments of recognition and familiarity with some things he talks about.  Like me, he has trouble with faces and person recognition.  I was also surprised (and pleased) to recognize that, if I\’m reading it correctly, he also built himself a mental framework by which to understand the world.  I talk about turning my brain into a prediction engine, so I can understand and work with people and the world in general.  This author did the same, but his process was much, much more effortful.  Where I was able to quickly generalize what a book or a door looks like, and thereafter ignore that information until it was relevant, it seems the author had to take a lot of time to reach that point.  He talks about learning each doorway and the contents of a room, having to take minutes on each object in order to familiarize himself with it.

As he aged, he had to do this less and less, it seems.  Which holds true for me as well, in patterns of people and life situations.  I\’ve been to enough stores, for instance, to know the basics of how one shops, and that I can usually ask for help from someone who works there and not seem out of place.  That holds true for cafes, for clothes stores, for electronics stores, and book stores.  As such, I usually don\’t become anxious much while I\’m shopping, because people usually hold to the same behavior patterns.  (The Apple Store is an exception, which is one of the reasons I don\’t go there much.  I always feel like I\’m being watched there.)

Read This Book If

This is, I believe, a copy of the very first book I ever read on autism, and likely the very book that convinced me I was actually on the autism spectrum.  The DSM-IV criteria was not terribly helpful, nor were peoples\’ telling me I was on it, beyond the psychological testing.  This book is now almost a decade old, so I find myself surprised at how much of it still remains valid and familiar.

The book itself is an exhaustive description of Asperger\’s Syndrome, from the diagnostic criteria to growing up to common mentalities, features, and pitfalls.  In retrospect, I don\’t think I\’ve ever come across a better description of the better-blended section of the autism spectrum.  This book would be well worth reading for anyone that needs to understand how we\’re likely to think and act.

One of the sections of the book I found interesting was the four compensatory/adjustment strategies to being different.  The first strategy, depression, was my strategy (or lack thereof).  I\’d sort of figured most autistic people at least dabbled into this particular strategy unless they weren\’t aware of being so different.  But I\’ve heard of the others from other peoples\’ stories: escape into imagination, imitation of others/characters, and denial/arrogance.

I once watched a TED talk by someone on the spectrum who had an intensely rich imagination, and one of the previous books I\’ve read also talked about having everything from imaginary friends to imaginary puppies.  And I\’ve heard of people on the spectrum latching onto and mimicking a particular, seemingly successful, friend, to the point of unhealthiness.  I must have managed to avoid the denial/arrogance option for the most part, which is probably just as well because both those traits can be blatantly harmful to everyone involved.  And arrogance, at least, drives me batty.  I tend to avoid people with that personality trait.  Perhaps I missed that path due to that tendency.

Another section that struck a chord with me was the jigsaw puzzle comparison in Chapter 3.  I\’ve talked about how I had to learn social conventions, what to say when, how to make small talk, etc.  But it\’s kind of hard to convey the difficulty of that learning process.  Professor Attwood compares social rules to a 5,000 piece puzzle.  Neurotypical people have the box to look at, with the complete picture to compare to when needed.  Autistic people lack that extra knowledge, so instead we have to learn each bit piece by piece, matching shapes and colors as best we can.  The difference, I suppose, between the metaphor and the reality, is that nobody yells at you, shuns you, or hurts you if you try the wrong puzzle piece dozens of times.

It wasn\’t all flawlessly accurate, of course.  The book focuses specifically on visual thinking, influenced heavily, no doubt, by Dr. Temple Grandin\’s books and other, similar sources.  There are many styles of thought in the autism spectrum, and mine is not particularly visual.   After half a year or so of puzzling about it, I\’m finally starting to understand.  Rather than pictures, numbers, or words, I seem to think in patterns.  I\’ll do a separate entry regarding the specifics of my thought processes, but suffice it to say I was confused given that patterns include sounds, words, colors, pictures, and numbers! 

Also somewhat inaccurate is the \”What Causes Asperger\’s Syndrome?\” FAQ in the back.  That\’s somewhat unavoidable, given the age of the book.  New research keeps coming out and it becomes increasingly impossible to keep books up to date.  Particularly if they\’re not textbooks and already being re-released every year.

Read This Book If

You want an owner\’s manual to Asperger\’s Syndrome/High Functioning Autism/better-blended autism, or want to know how your kid or acquaintance that fits that category may think and act.  I wouldn\’t say this book covers the whole of the autism spectrum, because it doesn\’t.  As soon as you add in communication difficulties, you add in a whole range of reactions and challenges that this book does not cover.  But for what it does cover, it\’s an excellent and nearly exhaustive resource.