1 in 88: On Diagnosis "Creep"

The New Autism Reality, by Ann Bauer:

If one in 88 among us is this way, it makes autism seem a little less terrifying and abyss-like and a little more like something that just happens in life. 

Today, when people ask about my children, I tell them my oldest has autism and the vast majority nod without horror. They act like I said he has Crohn’s disease or some other lifelong but manageable condition. They ask if he’s going to college, if he’s married, what he does for a living. With the “creep” of this diagnosis has come a welcome acceptance. My son, like a lot of people, is struggling with something difficult. But he’s doing so valiantly, and it doesn’t define him.

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!)

A Lie Becomes the Truth (Alternative Title: "What Happened?!?")

Lo and behold, lie #3 - older sib speaks for younger sib - has become the truth.

By way of background, Jeremy is 22 months older than Bradley, and Jeremy is about as typical as they come in terms of childhood development. I knew Jeremy would be a great big brother to Brad. He's nurturing and caring, and likes to lead in play. Jeremy is also a good peer model, with good social skills and language. What I didn't call is what a great friend Brad would be for Jeremy. Jeremy always seeks out Brad to play. It's not a one-way street, at all. They're like two peas in a pod, and I couldn't be happier.

They often play together, sometimes unattended, and inevitably there's some sort of conflict. After all, they are ages 4 and 6, so play requires some referee-ing.

Into the room I barge.

"What happened?!?"

The problem: Jeremy does all the talking. Perhaps I'm facing Jeremy instead of Brad when I demand an explanation. Perhaps I'm at fault here too.

I've noticed this a lot lately. Sometimes Jeremy reports aches and pains to me, on behalf of Brad. And sometimes, Brad needs help (wiping) in the potty, and rather than holler, Jeremy will come get me.

Now that this revelation has dawned on me, I'm going to make a conscience effort to elicit speech from Brad and tell Jeremy to shush when he goes into spokes-brother mode.

I'm not sure what else to do by way of remediation here. But at least now I know what lie #3 is all about.

Lies I Told Myself

When Brad was flagged for autism spectrum at 24 months, I was floored. Floored. I had no clue. Even though he displayed early signs of autism.

How did I keep my head in the sand? Here, I present the top 3 lies I told myself:

Lie #1: "He's just a boy." I got a lot of denial mileage out of this one. After all, boys speak later than girls, and are less socially attuned. As the 24 month mark approached, that lie became less viable.

Lie #2: "He's independent because he's a younger sib and my attention is divided." This is the way younger sibs are supposed to be, I reasoned. Even though he had no - and I mean zero - separation anxiety as a baby. I rationalized that this is because I didn't carry Brad around as much and cater to his every cry, as I did when Jeremy was a baby.

Lie #3: "He's late to speak because his older sib talks for him." Seemed reasonable enough. No reason to be concerned about language delay.

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!

Annual Physical.

Like most kids, Brad gets an annual check up around his birthday, which is in January. Two notable aspects of his most recent appointment:

• He failed the depth perception test. He passed the eye exam, meaning his eyesight, in the conventional sense, is fine. The nurse practioner administers a test with multi-directional Es and special glasses aimed testing depth perception, and he failed. Which means he wasn't trying, he didn't understand or, what I suspect, he has issues with ocular musle control and visual perception that interfere with depth perception.
  
• I unbundled one of his vaxes. Since, for better or worse, there is a "vaccine debate" (although I don't think the debate is debatable, meaning, I think it's well-settled that vaccines don't cause autism), I thought I'd share my views. Although I don't buy into the vax-autism link and I'm very pro-vax, I don't have a problem with a modified schedule, so I unbundled varicella from the other shots he received at his 4 year appointment. I don't follow the Dr. Sears modified schedule; I just follow my intuition, but in any event, I make sure he is fully vaxed - it just takes an extra appointment. I'm happy with my decision.

Why am I posting now? Because Brad goes for his varicella shot this upcoming week, and I'm going to have him re-tested for depth perception. I'll post the results. Wish him luck!

Corduroy learns a quadratic equation? A mom can hope.

Parts I and II of this series of posts here and here.

* * *

I love Cars. Love it. I own the DVD and several Cars-branded toys. I agree with its message.

However, I wonder if that particular message - what matters most is friends - is overly pervasive in children's stories. Don't get me wrong: I want to teach my children to value friendships. But I would also like to impart a message of acceptance. I would appreciate a diversity of messages in my children's stories. Where are the stories that teach children it's okay if you struggle with friendships?

Instead, the autism-friendly children's books are mostly about awareness and tolerance, or how to be a friend. Which isn't for nothing.

But I worry that the emphasis on autism as a disability and remediation of social impairment will, as this article puts it, "...imbue them [autistic children] with a sense that they're unacceptably weird."

I hope to spare my children this fate, which I think is unnecessary and avoidable. Maybe I'll write and publish (on this blog) my own children's stories.

DSM- V Epilogue

This week, we learned arrogance has a price.

To recap, the proposed DSM-V (which defines the defines the diagnostic criteria for autism) has been criticized for several reasons, including its insular process. Of the process, Dr. Allen Frances writes:

The secretiveness of the DSM‐V process is extremely puzzling. In my entire experience working on DSM‐III, DSM‐IIIR, and DSM‐IV, nothing ever came up that even remotely had to be hidden from anyone. There is everything to gain and absolutely nothing to lose from having a totally open process. Obviously, it is much better to discover problems before publication ‐and this can only be done with rigorous scrutiny and the welcoming of all possible criticisms.

Apparently, DSM-V Task Force knows it all because, by all outward indications, they prefer a closed process. When the self-appointed stewards of psychiatric diagnosis speak, the rest of the psychiatric community must bow to their wisdom.

But! This week, in a small victory to the DSM-V critics, the American Psychiatric Association (APA), announced it would postpone publication of the controversial DSM-V until 2013. The APA previously insisted the DSM-V would be published in 2012, critics be damned. The change of heart may have been prompted by an editorial published by the New Scientist, which suggested that the DSM V be replaced by an open source model:

With the advent of the internet, there is no longer any compelling need to rewrite the diagnostic criteria for the whole of psychiatry in one go. Yes, diagnoses should be revised as new scientific findings come in. But for this, specialists can be assembled when necessary to address specific areas that have become outmoded. Their suggestions can be posted on the web for comment. More research can be commissioned, if necessary. And when consensus is reached, new diagnostic criteria can be posted online.

Scientific method over ego. Consider this blogger sold on the New Scientist proposal.

And speaking of arrogance, this week Tiger Woods learned he isn't beyond reproach either. Which is ironic because the DSM V Task Force would have pathologized Tiger's...er...proclivities if they had their wish. And they may still do so, but at least it won't happen until 2013. I hear they're going to use the extra time to do more research, so perhaps Tiger can be a subject. Arrogance vindicating arrogance.

Quick Hit

New High School Expansion Serving Kids on Autistic Spectrum. I hope this is a sign of good things to come.

Quick Hit

WaPo reports: Teaching Mildly Autistic Kids the ABCs of Crucial Social Skills. I have mixed feelings about teaching social skills, but I'll reserve judgment on this one.

"Pruning"

When it comes to interventions, much is written about "rewiring" the brain - the theory (and, for some, hope) that intensive interventions can cause an atypical child to be more neurologically typical. Is rewiring possible? I don't think anyone knows for certain.

But it is well settled that you can work with the wires you already have. During childhood, the brain undergoes a pruning process, during which underused neurons and synapses simply die off. This is perhaps the best argument for early diagnosis and early intervention. With early intervention, perhaps we can prevent some of those tenuous synapses from dying off, and the sooner we start, the better the chance for a positive outcome.

With that in mind, in the coming weeks, I will blog about interventions that we have tried. In the upper right, I indicate that we use "moderate interventions." I'm going to try to give that vague statement a little more shape, speaking of course from a parenting/anecdotal POV.

First, a prefatory note about goals. Because, of course, as any special needs mom or dad with an IEP knows, you need to start with goals. About one year and nine months ago, if you had asked me about my goals for Brad, I might have replied that there is only one and that it is that he acquire speech. Flash forward about six months later, I started thinking more about social pragmatics and empathy. I added warmth and humor to the list of goals for Brad. Today, on a high level, my goals for Brad have shifted to intellectual capacity, i.e. making those higher order connections and doing whatever we can today to avoid intellectual disability down the road. Not that communication and warmth and humor aren't goals for Brad - they most certainly are. But I no longer fear that Brad won't acquire speech or develop empathy.

We vax.

As flu season approaches, I feel compelled to write: we vax.

As in, we fully vaccinate our children, including Brad who is mildly autistic and Jeremy who is allergic to egg.

On the Brad front, there is no doubt in my mind that vaccines don't cause autism. I fear the fallout of widespread vaccine rejection.

On the Jeremy front, he can have egg-based vaccines administered at an allergy clinic. They keep him for observation afterward, and can administer anti-histimine, steroids or epi-pen if needed. For the record, Jeremy is five, has received several egg-based vaccines and has never had an anaphalactic reaction to a vaccine. (He did have an anaphalactic reaction when eating eggs, scrambled eggs, undiluted, at age one.)

Be safe, everyone.

Added: An Epidemic of Fear [via Wired]

A beautiful memory.

And now for something completely different.


Free live streaming by Ustream

This week only, witness the genius that is Stephen Wiltshire, an autistic savant. It's a live stream of him drawing a cityscape of New York for CBSNews. He's drawing it entirely from memory after one helicopter ride above the city. The Early Show is featuring him this week. Click here for status updates, e.g., when he is drawing and for how long.

Enjoy.

Prevalence of Prevalence Statistics

In the wake of the recently published autism prevalence statistics, comes Behind the Autism Statistics, by the producer of Autistic-Like: Graham's Story. Behind the Autism Statistics is an insightful editorial, and I could relate to chunks of it from a parenting perspective, particularly being pushed into ABA and feeling as though it were a bad fit.

What struck me as I was reading it was this little gem:

A central goal of the SPD Foundation is to ensure that the disorder [sensory processing disorder], now estimated to affect as many as 1 in 20 children, is included in the DSM-V, which would turn it into an official diagnosis that would come with much-needed help.

Irony alert! An editorial that criticizes the establishment for distorting autism prevalence, suggests that the SPD net may be cast at 1 in 20.

From a parenting perspective, I've arrived at a place where I am fully at peace with the blurriness of the lines. I believe that "autistic-like" SPD is distinguishable from autism, if at all, in degree-only. And degree is not for nothing. Degree can be the difference between talking and not talking, and dependence and independence. I don't minimize the significance of degree. I just question the need for a new, potentially ill-defined label.

If treatment is the issue, and I share this concern, then why not lobby to reform the prescription for treatment of autism?

Geek + Geek = ?

While mainstream media is in a tizzy about reports of an increase in the rate of autism, I've been pondering something related, topical and near and dear to my heart: Geek Syndrome.

According to a recent study, autism does not appear to correlate to geeks procreating with other geeks, as previously hypothesized by Wired Magazine:

One provocative hypothesis that might account for the rise of spectrum disorders in technically adept communities like Silicon Valley, some geneticists speculate, is an increase in assortative mating. Superficially, assortative mating is the blond gentleman who prefers blondes; the hyperverbal intellectual who meets her soul mate in the therapist's waiting room. There are additional pressures and incentives for autistic people to find companionship - if they wish to do so - with someone who is also on the spectrum. Grandin writes, "Marriages work out best when two people with autism marry or when a person marries a handicapped or eccentric spouse.... They are attracted because their intellects work on a similar wavelength."

But hold the phone. The same study indicates that mothers in "highly technical" fields were 2.5 more likely to have geek spawn...er.... a child on the spectrum.

I look at Brad. I look at myself. Coincidence? I wonder.

TGIF.

[Via Left Brain/Right Brain]

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.

Potent Potables for $800

As Brad continues to phrase his observations in the form of a question, I am reminded of the original Jeopardy satire which gave us brilliant categories such as:

• Colors That End In "-urple"
• Months That Begin with "Feb-"
• The Number After 2
• Point to Your Nose

A Little Bit Autistic presents...Celebrity Jeopardy, featuring the awesome Will Ferrell as Alex Trebec [via Funny or Die]:

SNL Celebrity Jeopardy 10-23-99 - watch more funny videos

(Click here if the embed isn't working.)

Ferrell's comic genius is undeniable, but is it...special? As in, a special talent associated with an autistic spectrum condition. I have it on good authority that Ferrell had some familiar spectral traits as a child:

Born and raised in the Los Angeles, California, suburb of Irvine, in 1968, Ferrell was an easygoing child. "He was born like that," his mother, Kay, told Scott Raab in Esquire. "You know those little Matchbox cars? Will would line up his Matchbox cars, by himself, and be totally happy. You'd say, 'You wanna go to Disneyland today or line up your cars?' and he'd have to think about it." Ferrell was known as a funny kid even in elementary school, where he would punch himself in the head just to make girls laugh.

Makes me wonder. I know what a quirky kid looks like as a kid, but what does one look like as a grown up?

Of course, some would say spectral sitings are misguided, and that our energy would be better spent examining the relationship between autistic spectrum conditions and talent, and the nature of talent itself, rather than inferring autism where we see talent.

Chew on that. Or watch Funny or Die. Either one.

Another Esoteric Post About DSM-V

Remember those proposed revisions to the DSM?

Hold the phone. Apparently, a shitstorm is brewing.

Dr. Allen Frances, who headed the DSM-IV task force, fired the opening salvo with this blistering criticism. He writes:

Undoubtedly, the most reckless suggestion for DSM‐V is that it include many new categories to capture the milder subthreshhold versions of the existing more severe official disorders. The beneficial intended purpose is to reduce the frequency of false negative missed cases thus improving early case finding and promoting preventive treatments. Unfortunately, however, the DSM‐V Task Force has failed to adequately consider the potentially disastrous unintended consequence that DSM‐V may flood the world with new false positives. The reported rates of DSM‐V mental disorders would skyrocket, especially since there are many more people at the boundary than those who present with the more severe and clearly "clinical" disorders. The result would be a wholesale imperial medicalization of normality that will trivialize mental disorder and lead to a deluge of unneeded medication treatments‐‐a bonanza for the pharmaceutical industry but at a huge cost to the new false positive "patients"caught in the excessively wide DSM‐V net. They will pay a high price in side effects, dollars, and stigma, not to mentions the unpredictable impact on insurability, disability, and forensics.

* * *

A third category of DSM‐V innovation would create a whole new series of so‐called "behavioral addictions" to shopping, sex, food, videogames, the Internet, and so on. Each of these proposals has received little research attention, and they all have the potential for dangerous unintended consequences, by inappropriately medicalizing behavioral problems, reducing individual responsibility, and complicating disability, insurance, and forensic evaluations. None of these suggestions are remotely ready for prime time as officially recognized mental disorders.

I do not have space to enumerate the dangers of all the other innovative suggestions for DSM‐V, but I will list just some of the riskiest that require the most careful review and caution: adult attention‐deficit/hyperactivity disorder (ADHD) and adult separation anxiety disorder; making it easier to diagnose bipolar disorder; pediatric bipolar, major depressive, and trauma disorders; autism spectrum disorders; new types of paraphilias and hypersexuality disorder; and the suggested rating list to evaluate suicidality. [Emphasis added.]

Nice, huh? Sensory processing disorder inspires skepticism, and its inclusion is predicated on copious research. But shopping addiction? That's pathological! Maybe we should dress our sons in Manalo Blahniks? Label that, doc!

You can read the American Psychiatric Association's rebuttal here. The rebuttal has been criticized for its uncivil tone, and lack of substance.

To learn more, read DSM V Badly Off Track.

Source: Michelle Dawson's Twitter account

Comment Trolling on ParentDish, Part II

What are commenters saying about the recovery study?

Not much. It only drew five comments total, versus 145 for the ADHD post. The gem: an autism quack treatment I had never heard of before:

Just wanted to let the folks with Autism in thier families to know about our therapy. We have been testing with our Salt Boxes and getting very positive results. The children are sleeping through the night and moods are improved throughout the next day.To learn more about Salt Box Therapy please visit us @www.saltboxtherapy.com

Like a moth to the flame.

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.