One Person Book Club Revived

Once upon a time, I was new to the world of autism. I was very calm and deliberate back then. (Not.) Anyway, I charted my reading adventures under the tag One Person Book Club.

Here, I will list some of the other books I have read, but don't particularly recommend, along with a relatively new title I recommend highly.

First, the books I've kicked over the past few years that I can't recommend without qualification:

Quirky Kids - A decent basic reference for parents, but for me, normatively, it was too focused on remediation.

Smart Moves, The Dominance Factor, Brain Gym - These are OT-themed books. The skeptic in me can't recommend them without qualification - not evidence based enough. ("It worked for Johnny! That's all we know.") But they are interesting, and if lateralization and the mind/body connection are areas of interest for you, you might enjoy these books.

And now for a book just published in May of this year that's a must-read for parents, particularly if your child is hyperlexic: Autism and Talent. Where so much of the research and so many of the parent resources are focused on deficits and remediation, this book focuses on talent, and in doing so, sheds light on the nature of autism itself.

The introduction is available for free online here. The book includes contributions from Simon Baron-Cohen and his research team, Temple Grandin, Laurent Mottron et al, whose research team includes netizen Michelle Dawson, and Allan Snyder (whose research the Eide Neurolearning Blog discussed here).

And to be clear, I recommend this book both from an intellectual perspective (interesting read!) and from a personal, parenting perspective. This book gave me a glimpse under the hood, and I'm not referring to talent (because to do so with a 4 year old is a little silly). I'm referring to the bias to local processing and the differences in sensory discrimination and processing. The entire book is evidence-based theorizing by some of the world's most respected researchers, but it's written in non-technical speak, so the every-mom or every-dad can understand. It also includes information (and, I think, messages) specifically directed towards us parents, as to how to develop talents. (Hint: regarding talent as maladaptive is not encouraging to the subject!)

The Mislabeled Child: On Sensory Processing Disorder

The Mislabeled Child indicates that sensory processing disorder ("SPD") is one of the conditions that leads to an autism mislabel. But! Is it a distinction without a difference? They write:

In fact, there is some relationship between sensory processing disorder and autism. Many children with autistic spectrum disorders also have sensory processing disorder, and some experts actually consider sensory processing disorder to be part of the autistic spectrum.

Hmmmm, very interesting. Here's the good part:

Both children with autistic spectrum disorders and those with sensory processing disorder show difficulties with high-level tasks involving the integration of different brain areas. These include complex sensory (e.g. vision, hearing, position, alance, motion and touch) and motor functions and also emotional regulation. Typically, though, the deficits seen in children with sensory processing disorder are "patchier" than those seen in children with autism, with greater sparing of higher order functions in areas like language, social affiliation, and empathy.

So, let's recap. According to The Mislabeled Child, SPD is superficially similar to autism with respect to behaviors, it may or may not actually be on the spectrum and, behind the behaviors, it's pretty much the same, only "patchier" and sparing of higher order functions.

Now, if I apply the Mislabeled Child paradigm to Brad, he probably falls under SPD. I think he has "affiliative drive", and he definitely has good mirroring skills, which would indicate he's not autistic, as per The Mislabled Child. Moreover, Brad has what the book describes as the physical manifestations of SPD. Of diagnosing SPD, the authors write:

Among the most common findings we see on exam are difficulties with finger-position sense, finger confusion, gross- and fine-motor coordination, low skeletal tone (especially of the core or postural muscles in the trunk and neck), difficulties with visual motor control and visual processing, and difficulties with auditory processing.

Brad has each of these physical issues. And that's not just my subjective opinion; these difficulties were observed by his developmental pediatrician (the second one, not the first one we kicked to the curb) and the school district. To clarify, these are also signs of DCD or dyspraxia, which itself is a symptom of SPD.

The Mislabeled Child: On Autism Spectrum Disorders (ASD)

This is second installment of my discussion of The Mislabeled Child. Here is a link to the first installment. This is a long one, so I've divided it into parts.

I Background

As I blogged, the authors write through a "neurolearning" lens. Of labeling, they write:

Labels matter becasue they can cause us to take an overly sterile, detached, and clinical view of a child's learning challenges and forget that these challenges occur in the context of a child's unique and complex life. They can make us overlook the important role that a child's unique temperament plays in dealing with learning challenges, and our need to help children develop character traits like optimism and resilience. [Emphasis added.]

The problem is: science is sterile and detached, by definition. And arguably, those very qualities are what provide a diagnosis with integrity and rid it of bias. Education and learning are, at best, social sciences and at worst, entirely unscientific. Autism, by contrast, is a biological condition - a life science, not a social science.

II Mislabeled

Applying the neurolearning lens, the authors conclude that autism is a commonly misapplied label. These mislabeled children, they argue, often have other conditions that are superficially similar to autism. They write:

...[c]hildren with these other conditions don't show the severe deficits in emotional empathy, "mirroring," and social affiliation (or sense of bonding with others) characteristic of autistic disorders.

They also report that children with autism present with different brain scans when compared to children with "other conditions." From a learning perspective, the group the authors label as autistic are generally impaired with respect to higher order thinking.

Noticeably absent from the differential diagnosis: engagement, the lack of which is commonly regarded as a defining quality of autism. They concede that these mislabeled children often have difficulty with social interactions and are superficially similar to autistic childen.

In essence, the authors are drawing a line where it doesn't otherwise exist from the perspective of empirical observation of behaviors (which they pejoratively describe as clinical and sterile). They don't expressly argue that practitioners are misapplying the DSM-IV diagnostic criteria. Rather it appears that they are arguing that, to get at the essence of autism, we need to go behind the behaviors. Pop open the metaphorical hood and poke around.

III The Good

What works best about the neurolearning paradigm is the prescription for treatment and particularly, how to teach or apply learning strategies to autistic children. This is a pet issue of mine, right? I started blogging in part because Brad's doctor was pushing ABA and I've faithfully blogged against ABA-pushing ever since. The Mislabeled Child articulates a great, easy-to-understand prescription for treatment for autistic children and nonautistic children alike. What follows is an outline of the relevant section on autism:

General Principles for Helping Children with Autistic Disorders

• Reward and Motivation
• Using Their Best Learning Strengths and Styles
• Simplifying Information Input and Pattern Processing

Helping Children with Autistic Social Impairments

• Helping Autistic Children to Develop Empathy
• Helping Autistic Children Improve Their Social Interactions

Helping Children with Autistic Communication Impairments

• Improving Verbal Comprehension
• Improving Nonverbal Comprehension
• Improving Verbal Expression
• Improving Nonverbal Expression

Helping Autistic Children with Attention and Self-Regulation

• Helping Autistic Children Improve Attention
• Helping Autistic Children Improve Emotional Self-Regulation

Their roadmap for treatment is helpful, and I would encourage you to buy the book if you are interested in learning more.

The authors don't directly prescribe ABA as a treatment, but rather intimate that some of the underlying principles (reward and motivation) have merit. They write:

...[a]utistic children typically have a diminished desire to imitate others or to please and earn praise from others. In this way, they differ from most children, who quite naturally want to imitate and please parents and other adult authority figures - like teachers. Usually we take these desires to imitate and please others for granted in designing our educational and therapeutic systems. However, when a child has little intrinsic motivation to imitate or please, we must find a way to motivate her using things she finds extrinsically rewarding. [Emphasis added.]

The authors don't go on to draw the negative implication, so I will: if a child has the desire to imitate or please, it doesn't make sense to use an intensive program of therapy like ABA which is based on a system of extrinsic rewards. Common sense, right?

Not so much. As I blogged a few weeks ago, Deborah Fein et al published a study in which a group of children who present with "verbal and motor imitation" skills were said to recover from autism, and the study implies (but does not prove) that intensive ABA therapy caused this positive outcome. So there's a group of respected researchers who have taken common sense and turned it on its head: let's take the children who are imitating (without extrinsic rewards) and subject them to an intensive system of therapy (40 hours per week, recommended!) based on extrinsic rewards.

IV The Shortcoming

While I think the neurolearning paradigm is compelling, it does have a shortcoming: it's ahead of its time, for two reasons:

1. The neurological indications (ie abnormal brain scan) are not dispositive as biological markers for autism at this juncture, from a scientific perspective. There are clusters of patterns of statistical significance, but not enough to define autism in whole, because autism itself is such a heterogenous condition. For example, from an etiological perspective, there may be five different autisms, three of which have observable neurological indications (ie abnormal brain scan) and two of which do not. In truth I don't know how many etiologically distinct "autisms" there are; no one does. Today. Maybe tomorrow, but not today. And even if we fast forward and hypothesize that biological markers will be discovered, who's to say that they will take on the form of neurological indications? Perhaps, one day the "litmus test" for autism will be a genetic test, not a brain scan.
   


2. The correlary to autism as a mislabel is that these children often have an "other condition" that mimics autism. In other words, it's "you don't have this (autism), you have THAT." However, at least one of the THATs - sensory processing disorder - isn't recognized in the DSM-IV. This means there is no uniform way of diagnosing it. It also means that the label won't be respected or understood by the public school systems. In this blogger's opinion, a label is useless and perhaps harmful if it isn't uniformly applied or understood. Which, ironically, is the argument commonly used against the liberal application of the autism label. But the same argument can be made, more forcefully, with respect to SPD. (To be clear, I'm not arguing that SPD is a bad diagnosis or doesn't exist; I'm merely arguing that, today, it's poorly understood and not respected.)

More on sensory processing disorder and where I think Brad fits into it all in my next installment.

Next up for the one person book club...

...The Mislabeled Child, as promised. It's 510 pages long, so I'm going to break this up over a number of weeks. This week, I'll be skimming the surface starting with:

The cover. Check this out. The kid is smiling! Compare and contrast to the disturbed child on the cover of Out of Sync Child. The tone of the book is similarly upbeat, imploring the reader to focus not just on impairment but also on positive attributes.

Of the books I've read, The Mislabeled Child is the best explication of what I call the A Little Bit Autistic-sphere because it describes the relevant disorders and their component parts comparatively, and it does so in a parent-friendly manner. So while many books separately explore autism, sensory processing disorder and language disorders, this book pulls it all together and then some (ADHD), compares and contrasts the disorders to each other, and peppers in the neurology for credibility and good measure. Also, it explores what I refer to as the lesser-includeds: visual processing impairment, central auditory processing disorder, working memory impairment and dysgraphia.

Next, a note about the authors, Brock Eide, M.D., M.A., and Fernette Eide, M.D. Brock Eide's medical specialty, in the formal educational sense, appears to be internal medicine, while Fernette Eide is a neurologist. Together, they run the Eide Neurolearning Clinic, specializing in neurologically based approaches to learning. They host this blog.

And here they are, on tv, plugging their book:

Nice people.

Last, a note about the title, "The Mislabeled Child." See, the book is not about unlabeling, or losing the label. Labels are useful, the Eides argue. Rather, it's about re-labeling in the broadest sense. They cite as an example of mislabeling a dyslexic child whom the educational system "labeled" lazy, careless and slow.

The "neurolearning" lens is pervasive throughout the book and shapes how the Eides define autism, and the other conditions they explore. In an earlier post, I explored the fundamental question: what is autism? Under the Eide/neurolearning paradigm, autism appears to be defined in large part by its neurological indications and the child's learning strengths and weaknesses. Behaviors are taken into account, but are not dispositive in and of themselves. In a recent blog post, they write:

Historically, autism was first recognized as an entity by a psychiatrist, but as it becomes even more clear that the behavioral label subsumes many different neurological conditions, it's time for business-as-usual to come to an end.

***

In the coming weeks, I'll explore the chapters on sensory processing disorder, autism and ADHD.

Prospective

Looking forward, in the next month I'm going to blog about various chapters of the book, The Mislabeled Child. It's a good read for parents of A Little Bit Autistic types. Just a "heads up" if you want to follow along.

"I was normal, for what I am."

My latest entry in my One Person Book Club is Look Me in the Eye, by John Elder Robison. Robison happens to be the brother of Augusten Burrows, who authored Running With Scissors (upon which the movie of the same name is based). However, Robison is accomplished and interesting in his right. Also: he's a good netizen.

Look Me in the Eye is a great read from start to finish. Parts of it were informative, explaining how an Aspergian thinks. But the bulk of the subject matter is a compelling story having little to do with Aspergers itself, narrated with a strong Aspergian voice. So, more often than not, he shows the reader how he thinks, rather than tells us.

Robison was not diagnosed with Aspergers until he was in his 40s. He writes, of reading about Aspergers:

Just reading those pages was a tremendous relief. All my life, I had felt like I didn't fit in. I had always felt like a fraud or, even worse, a sociopath waiting to be found out. But the book told a very different story. I was not a heartless killer waiting to harvest my first victim. I was normal, for what I am.

This passage left a strong impression on me. My journey has caused me to think a lot about what the label means. I've blogged about what I think the label means in the objective sense, and others have chimed in about how they perceive the label - some positive, others negative. Often overlooked in the debate is what the label means for the individual with the condition. What I gather from the account of Robison and others is that with the label comes a sense of understanding and a sense of community and pride.

And so while others concern themselves with the negative stigma associated with the label, I'm struck by the importance of the label with respect to identity. Imagine if you were ethnically diverse or racially diverse (in a nonapparent way), and your parents never told you to spare you negative judgement by ignorant people? This is, in part, why I think it's harmful to dodge the label.

I thank Robison for his emotional honesty.

Another entry in the one person book of the month club.

Over vacation, I read An Anthropologist on Mars: Seven Paradoxical Tales, by neurologist Oliver Sacks.

An Anthropologist on Mars is not a book about autism. Rather, it's a series of case studies which examine the brain's ability to reconstitute "self" or identity when it is injured or diseased. For example, one chapter examines an individual who suffered a severe brain tumor in his 20s. Another chapter examines Temple Grandin, the subject of Thinking in Pictures.

It's a fascinating read, with remarkable subjects. The common theme throughout the book is the nature of the injury or disease, and its relation to self. Of Tourette's, Sacks writes:

Any disease introduces doubleness into life - an "it," with its own needs, demands, limitations. With Tourrette's the "it" takes the form of explicit compulsion, a multitude of explicit impulsions and compulsions: one is driven to do this, to do that, against one's own will, or in deference to the alien will of the "it." There may be a conflict, a compromise, a colusion between these wills....

But the relation of disease and self, "it" and "I," can be particularly complex in Tourette's, especially if it has been present from early childhood, growin up with the self, intertwining itself in every possible way. The Tourette's and self shape themselves each to the other, come more and more to complement each other, until finally, like a long-married couple, they become a single, compound being. This relation is often destructive, but it can also be constructive, can add speed and spontaneity and a capacity for unusual and sometimes startling performance. For all its intrusiveness, Tourette's may be used creatively, too.

This concept of self echoes statements I've read from neurodiversity advocates. For example, autistic advocate Jim Sinclair states:

Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person.

Moreover, Sinclair rejects the designation "person with autism", preferring "autistic person". Sinclair compares describing an individual as a "person with autism" to describing a man as a "person with maleness."

As illustrated in Sacks' case studies, this concept of self is not unique to autism. In my opinion, while the "I" often fuses with the "it" in a theory of mind sense, the "I" does not negate the "it" in the biological sense. Autism - the "it" - exists independent of individual as a genetic condition. (Of course, the genetics are yet to be fully explicated.)

The analytic framework set forth above sheds light on the differences between the pro-cure and neurodiversity camps. In basic terms, neurodiversity advocates reject the separateness of the "it", while "curebies" refuse to acknowledge, or value, the impact of the "it" on identity.

Latest entry in my one-person book club: Thinking in Pictures

While many autism books recite the DSM-IV checklist and objectively describe the condition from an outsider's perspective, they offer little by way of insight. To date, science hasn't discovered the biological markers for autism, so we're left comparing empirical observation of "symptoms" to a checklist (DSM-IV). But empirical observation is unsatisfying. For example, one can observe that Brad doesn't consistently respond to his name and has a communication impairment. But what does it mean? What's going on in there, in his brain?

Thinking in Pictures provides insight in this regard because it was written by an insider. As the title denotes, Grandin thinks in pictures. She writes:

My imagination works like the computer graphics programs that created the lifelike dinosaurs in Jurassic Park. When I do an equipment simulation in my imagination or work on an engineering problem, it is like seeing it on a videotape in my mind. I can view it from any angle, placing myself above or below the equipment and rotating it at the same time. I don't need a fancy graphics program that can produce three-dimensional design simulations. I can do it better and faster in my head.

I create new images all the time by taking many little parts of images I have in the video library in my imagination and piecing them together. I have video memories of every item I've ever worked with -- steel gates, fences, latches, concrete walls, and so forth. To create new designs, I retrieve bits and pieces from my memory and combine them into a new whole. My design ability keeps improving as I add more visual images to my library. I add video-like images from either actual experiences or translations of written information into pictures.

Further, Grandin recalls that she did poorly in math as a student. Math is pure abstraction. Without a visual association, she appears to be at a loss.

Before I read Thinking in Pictures, I watched this video of Grandin, in which she displays modest wit, charm and humor. So I was surprised to learn that, by her admission, she has almost zero social intuition. That is, she doesn't intuit social cues. She studies them, like a scientist, and has learned to mimick them.

While Temple Grandin's accomplishments are extraordinary, I'm not certain that her mind isn't ordinary in the autistic sense, or generally representative of the way many autistics think. Research seems to suggest that her thinking is rather, for lack of a better word, typical. For an atypical thinker.

I'm 0 for 2.

When I maxed out on trolling the internet, I decided to buy a few books. As fascinating as the firsthand accounts of other parents were, I realized that they weren't entirely reliable because they were, after all, just anecdotal stories. I decided I was ready for serious study and hard data.
Out of curiosity, I bought The Einstein Syndrome. Everyone knows some one who was a late talker. This can't be imagined phenomenon. But what distinguishes a late talker from a child on the spectrum at age 2? How can one make a differential diagnosis? The book answers neither of these questions. Instead, the book describes its subjects, late talkers such as the author's son, as brilliant, and disparages children with ASDs, refering to autistic savants and "idiot savants." The book is so steeped in elitism, it made me want to vomit. Gag-reflex aside, the author's elitism clouds his judgement. The book posits the theory that analytical skill, in lay terms, hogs a late talker's grey matter, thus leaving less grey matter to acquire speech. The basis for the theory is an overdeveloped lobe of Einstein's brain. (Who knew they autopsied that sucker for posterity?) But the author doesn't address that children with ASDs are smilarly regarded to have "extreme male brain," leaving me to conclude that his "research" is self-serving and biassed.

The other book I purchased was the Autism Sourcebook. Little did I know when I bought the book that the author is an ABA zealot. She goes as far as to recommend that toddlers forego nap in favor of more ABA hours. Lets consider this proposition for a moment. Sleep is essential to the development of the mind. So she advises that children with a pervasive development disorder forego that which essential to development?