Proposed Revisions to the Diagnostic Criteria for Autism Spectrum Disorder

As you may have heard, the American Psychiatric Association has proposed sweeping changes to the diagnostic criteria for autism spectrum disorders (ASD). As a result of these changes, it is estimated that 45-80% of those previously diagnosed with an ASD will no longer qualify for that diagnosis. I understand that there may be a new substitute diagnosis referred to as "social communication disorder", which may be applied to those who no longer qualify as having an ASD.

There are so many Big Issues that I don't feel qualified to weigh in on here. Will this lead to a more or less just allocation of resources? What about the issue of identity? After all, "asperger's" is more than just a label; there are huge swaths of people who identify as "asperger's." You can switch up a diagnostic manual, but you can't just take away a sense of identity from people. Will those with asperger's coalesce around the new label ("social communication disorder")? How will these changes affect my son? These are fascinating questions. I don't have answers.

I'm writing in reaction to a post I read by another blogger, and I'm just writing to put my anecdotal experience out there. Writes another blogger whom I admire and respect (emphasis added by me):

I do understand that the surge in ASD diagnoses has placed a huge burden on the healthcare system and school budgets. If it's true that a large fraction of ASD kids are improperly diagnosed today, it would stand to reason that the services currently being delivered are not needed. If so, where is the outcry over waste? There isn't any, because it's universally accepted among recipients that the services ARE needed.

With all due respect, I wouldn't say that this is universally accepted. May I direct you to Exhibits A, B and C. Not every child benefits from intensive ABA. The agency we used at one point told us Bradley doesn't need the services they were providing. They set up goals for him, recorded his progress in a binder and it soon became obvious he wasn't enough developmentally impaired to benefit from the program. He maxed out very quickly, meaning he met all the goals they established. In hindsight, this was a colossal waste of resources when you consider the cost of ABA and the children in other communities who are much needier and who don't have access.

You may counter that my family is in the minority because I am in Massachusetts where services are abundant. True, but autism advocates lobby national companies to add an autism benefit. If a national autism benefit were added, families like mine represent potential claims experience - a substantial liability with respect to which the benefit of coverage is uncertain. The new definition of autism represents a way to manage that liability and tie it more closely to a population that is more likely to benefit from the services. Managing that liability may, in turn, result in increased coverage. For this reason, my at-first-blush reaction is that the revised definition will be beneficial.

Quick Hit

Psychology today muses: Not Quite Autism - At the Borderland of ASD. (Hat tip or...er....belly rub...to GoodFountain.)

It's all there: intersecting spheres, blurry lines and a slew of vaguely defined conditions. I've resigned myself that this is all there is until and unless epigenetics makes a quantum leap.

Have a great holiday!

Label Junkies: University Edition

This week I'm taking a break from interventions to ponder another lofty subject - accommodation.

Law.com reports: Princeton Student Sues Under ADA for Refusal of Extra Time to Take Exams. The learning disabilities at hand read like a "best of" edition of The Mislabeled Child:

• Mixed-Receptive-Expressive Language Disorder, which limits her ability to comprehend language, express language or recall material.

• Disorder of Written Expression, which leaves her ability to communicate in writing below the level expected based on age, intelligence or life experiences. When she writes, she has to repeatedly re-check what she has composed.

• Developmental Coordination Disorder, which leaves her ability to spell, punctuate and form sentences below the level expected based on age, intelligence or life experiences. She needs to read material several times over, isolate key words and highlight them so she can locate them again. Also under this disorder, her visual-motor processing skills are in the sixth percentile, "far below the average person, let alone the typical Princeton University student." She also suffers eye strain when taking tests and needs periodic breaks because of the way she reads passages over and over.

• Attention Deficit Hyperactivity Disorder, which limits her ability to focus. When reading, any distraction requires her to go back to the beginning of the passage.

It appears that, in a policy shift, Princeton's Office of Disabilities gaveth and then tooketh away:

Metcalf-Leggette learned of her diagnoses in 2003. Later, at the private school she attended, she received a 100 percent time extension for exams; a 100 percent extension on the SAT; and a 200 percent extension on the ACT.

Her older brother, David, who also had learning disabilities, graduated from Princeton University in 2008 and was given 100 percent extended time for exams while there. Metcalf-Leggette says she was told his extended time was approved by the predecessor of Eve Tominey, the director of Princeton's Office of Disability Services. Tominey left the extended time accommodation in place for David Metcalf "as a courtesy," the plaintiff says in her suit.

On the issue of accomodation, I hate to be wishy washy, but I can't help but see both sides.

First, the rights of the learning disabled must be weighed against the rights of the nondisabled. Educational institutions should attempt to level the playing field without giving the learning disabled an unfair advantage. How to accomplish this, I'm not sure. I'll reserve judgement on this one since there is so much I don't know.

Second, the rights of haves must be weighed against the have nots. In many places, it costs thousands of dollars to obtain a diagnosis by a neuropsychologist. So what about those who have a learning disability who can't afford to get a diagnosis (or whose parents don't know to pursue one)? The current system rewards the haves.

Third, the slope is slippery when you consider extra exam time for ADD/ADHD. Where do you draw the line?

And last, on a personal note, I feel emotionally invested in appreciation for individual learning style. Obviously, because my life is touched by it. Take history, for example. Can't schools test a pupil's command of the subject matter without making it an exercise in speedwriting? Can't teachers in grammar school slow down and appreciate that not all children can follow rapid pace multi-step commands? I worry about these things!

I will close with some choice comments on the lawsuit, via the Blackbook Legal Blog. First, an impassioned defense of accomodation:

Do some folks take advantage of the system? Sure. But the system is there to help those who really have a serious need and just require a bit of leveling the playing field to demonstrate they have the same knowledge as their non-disabled counterparts. If not for accommodations and technology I would still be a college fail out, instead of having 3 degrees with honors.

All I ask is a fair chance to show that despite my disabilities, I still know the law, and I can still practice the law. I know my limitations, I know my weaknesses, and I am not asking for anyone to feel sorry for me or give me an advantage over anyone else. All I ask for is the use of the technology I need and the time to use it, then let me rise or fall on my own. My grades, the vast majority of which were earned un-accommodated and my getting to within 11 points of passing the bar exam in half the given time show I know the law, I just need a bit of extra time to show I can write the law in a readable manner.

And one commenter makes light of the label junkie-ness:

I was always a bit suspicious of these claims (I must admit that when I read the list of conditions the plaintiff was claiming it seemed like something from the Onion, I was expected to see "intelligence deficit disorder"). Even assuming they are 100% legitimate, I thought a fair compromise would be to allow the student to take the tests untimed but to make clear that these students could not receive a class rank without taking the tests under the same conditions as everyone else.

I ressemble that remark.

Just Asking, Part I

What does PDD-NOS look like in an adult? Where are the support groups for PDD-NOS (support for those who have it and parenting support)?

I know what asperger's looks like in an adult. For starters, I worked with one once. Interesting story, but I won't get into that here. Also, there are plenty of media depictions of adults with asperger's. Look up asperger's support, and there are several centers throughout the region that I live in.

But PDD-NOS? Nothing. My hypothesis: an adult with PDD-NOS probably identifies as "autistic" as an adult. (Or typical. Or asperger's.) Which is true, because PDD-NOS is on the autistic spectrum. So perhaps an adult who was diagnosed with PDD-NOS as a child and whose diagnosis "sticks" will identify as autistic and seek out support through autism support networks. Likewise, there is little by way of parenting support specific to PDD-NOS.

Another hypothesis: "PDD-NOS" is a label so meaningless that no one - not even those who have it - want to use it.

Of course, there are a lot of autism support groups and resources for parents. But as I learned early on, and much to my chagrin, "if you've met one autistic person, you've met one autistic person." Finding that commonality is challenging. I'm sure parents of children from every corner of the spectrum can relate to that sentiment.

Just Asking, Part II

What about sensory processing disorder (SPD)? Where are the SPD adults and SPD support (for those who have it and parenting support)?

For starters, there is the SPD Foundation, incorporated in 2005. I'm not sure how high its profile is at this juncture, however.

As for support, I see two obstacles. First, SPD is not formally recognized as a diagnosis. Second, those who do diagnose it (mainly occupational therapists) haven't been doing it for long, relatively speaking. As noted above, the SPD Foundation incorporated in 2005, whereas autism support has been around for much longer. SPD support simply isn't evolved in part because it hasn't been around that long.

As for the lack of adults with SPD, perhaps that's in part due to the novelty of the diagnosis and in part to the affect of maturation on SPD. By the time adulthood sets in, perhaps the condition has lessened or the person has learned to adapt? Just guesses. In the next ten years or so, perhaps adults might start identifying as having sensory processing disorder? But as of today, that doesn't appear to be the case.

Added: As Kris points out, SPDLife is a resource dedicated exclusively to adults with SPD.

Asked and Answered

Now let's consider dyspraxia, which is often used interchangeably with developmental coordination disorder or DCD.

Send in the adults! Early on, I discovered this video "playlist", entitled "Dyspraxia and Me." Not kids. Adults. Yes, they exist!

See, in the UK the "dyspraxia" label has been around for quite some time. The medical community and the schools recognize it. DANDA, the Developmental Adult Neuro-Diversity Association, provides support and awareness. Troll Amazon UK for books on dyspraxia and you'll find thousands, literally. Unlike SPD in the US, the "dyspraxia" label in the UK is evolved and accepted.

Why do I care? As I have blogged, I believe that "recovery" exists for PDD-NOS. To me, this means that the child met the diagnostic criteria and then at some future point ceased to meet the diagnostic criteria. Often this is referred to as "becoming indistinguishable from one's peers."

But I don't believe that PDD-NOS or SPD or DCD ever goes away. Rather, I believe that symptom severity decreases and it manifests itself in a different manner. And that's what I try, most often in vein, to wrap my brain around. What's left after the diagnosis goes away? Perhaps the video stream is a glimpse? Perhaps not, but at least it's something.

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.