A Little Bit Autistic

Back To School Video

2011-09-23T17:32:00.000-07:00

Interview subject has the sillies.

And here is Jeremy's first day of school interview, with Brad and more sillies, lazing around the house in the morning.

What happens in Fight Club...

2011-09-23T16:22:00.000-07:00

***Spoiler Alert: mild Fight Club spoilers below***

I have Fight Club on the mind. The movie. But for a non-obvious reason. I feel like Edward Norton in the beginning of the movie, when his character goes to support group meetings, for various medical conditions he doesn't have, including testicular cancer and gynecomastia. There's a great scene in the movie featuring a sweaty Meatloaf with man boobs seeking emotional support. That's the way I feel sometimes. Not like Meatloaf, but like Edward Norton bearing witness.

Over the last few years, I too have sampled parent support groups. Anyone else in the blogosphere do this? Even when you were in the I'm-not-sure-whats-up stage? I'm just sitting there thinking, am I Edward Norton in Fight Club, or am I like these other parents, just in denial? The answer is likely somewhere in between.

For starters, I've met with a few mothers of children who are severely autistic. These mothers are of such high character, I don't feel worthy of being mentioned with them in the same sentence. The challenges, from darting to self-injurious behaviors to almost no verbal communication. I feel like my life is richer just by having met these wonderful parents - heroes really - but I could not relate to their challenges.

Next, I went to a small informal talk for parents led by a social worker. It was broadly focused on dyspraxia, nonverbal learning disability (NVLD), aspergers, dyspraxia and central auditory processing disorder. The problem with this one is that it was just bullshit. Tremendously disappointing. It started with a youtube clip, which she couldn't get to work with her overhead. But rather than moving on, she held us captive for 15 minutes while she tried to get youtube to work. She couldn't wing it. Not confidence inspiring. I got up in the middle of the meeting and left, after she told her captive audience that children with asperger's "are atonal and don't process emotions." Check please!

Most recently, I went to an asperger's parents support group. Best fit yet. I really connected to the parents and their anecdotes and view points resonated with me. At one point, the person running the meeting quoted a story written by a child with asperger's (who is now an adult and an accomplished journalist):

Well, we went to Boston, Massachusetts through the town of Warrenville, Connecticut on Route 44A. It was very pretty and there was a church that reminded me of pictures of Russia from our book that is published by Time-Life. We arrived in Boston at 9:17. At 11 we went on a big tour of Boston on Gray Line 43, made by the Superior Bus Company like School Bus Six, which goes down Hunting Lodge Road where Maria lives and then on to Separatist Road and then to South Eagleville before it comes to our school. We saw lots of good things like the Boston Massacre site. The tour ended at 1:05. Before I knew it we were going home. We went through Warrenville again but it was too dark to see much. A few days later it was Easter. We got a cuckoo clock.

Wow. This is exactly how Brad talks. It's all about the time and idiosyncratic details.

But then...

She asks the entire group "who here has a child with anxiety issues." She nods knowingly when everyone raises their hand. "Yes," she says, "children with asperger's have anxiety." Well everyone's hand was raised but mine. Brad has no anxiety. None. And bam! I feel like Edward Norton. You don't really belong here.

So you see, the more things change, the more they stay the same.

Back To School

2011-08-28T08:06:00.000-07:00

Just a quick update, and apologies for slacking. I’ve taken a break from label gazing and am focusing on…living life. Which is a good thing!

At age 5 and a half, Brad is doing well.

On the speech front, he was recently evaluated and is testing in the average range for vocabulary, language organization, syntax, direction following, paragraph comprehension and question comprehension. All good! His deficits are in the domain of “narrative formulation skills.” Even there, he is okay when questions are structured, but when questions are open, he struggles. Also, not surprisingly, his speech is characterized as idiosyncratic. As for pragmatics, he excels at “topic initiation” but fails at “topic maintenance”. Love the SLP jargon. Big picture though, he is communicating, and it’s mostly in the average range. I’m so proud of his progress.

Now onto the fun stuff: he’s off to kindie in a few weeks. Can you believe it? He’ll be in the public school in a regular classroom, with an aide. Not a private aide – that I’m aware of anyway. He’ll get pull outs for speech and some sort of social group. I haven’t had the first meeting yet with the school, so I’m not really sure of the details at this point. I’m afraid for him, socially, but that’s my problem, not his. His special ed team says he’s ready.

As Bradley’s speech has improved, his personality has continued to emerge. He really is a joy to parent. Of course I’m biased but he really is very sweet, smiley and well behaved. He continues to be quirky, but that’s what makes him who he is. We appreciate his unique perspective.

Academically, he’s reading up a storm. I marvel at this ability, especially because he’s so far ahead of where his brother was at this age. However, his reading ability is way ahead of his comprehension – which is either good news or bad news, depending on how you look at it.

Anyway, sorry again for the slackage and best wishes to all.

Update

2010-12-11T16:39:00.000-08:00

Hey all,

Sorry for the infrequent updates.

Brad is doing well. Progress continues to be slow but steady. It's like we had a language explosion from age two through 2.5 years, but from 2.5 through 4.5, it's been really slow language-wise. Just trying to be completely honest.

That having been said, and without further ado: we had our IEP meeting last week, and it's official: Brad's going to kindie next year. Full on mainstream, only he will be in a class with an aid. Not his private aid, but a teacher's aid. Accommodations include wait time and prompting and the like.

And private speech therapy continues to hum along. Same type of inference/"how do we solve the problem" drills.

On the social/friendship front, not a whole lot going on there. But he had a blind date - a playdate where the mom didn't know Brad has a dx - and it went okay. That was just two days ago. I might try to fix him up again. The suitor is the little brother of one of Jeremy's friends, and he's age-matched and in the same school district. I think he's a good catch.

So that's what we're up to. Hope everyone in the blogosphere is doing well. I will try to post a video soon.

One Person Book Club Revived

2010-09-23T05:48:00.000-07:00

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!)

Gone fishin.

2010-08-08T13:24:00.000-07:00

I hope everyone is having a nice summer. Breaking news on our end: Brad is swimming!

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

2010-07-20T11:34:00.000-07:00

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

2010-07-20T11:15:00.000-07:00

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.

Speech Update: Four Years, Three Months

2010-07-07T04:14:00.000-07:00

I received the written report from his most recent speech evaluation. (A post on last year's evaluation here.)

Bad News First: Overall, his expressive communication was pegged at two years nine months. Over the twelve months from May 2009, he only progressed five months. He scored a 63 on the expressive language portion of the Reynell Developmental Language Scale, a test in which the mean for his age is 100 plus or minus 15. So that's discouraging.

His deficits appear to stem from four types of issues: verbal/visual association errors, paragraph comprehension, semantic errors and rigidity. The examiner also observed "as expressive language tasks became more complicated and Brad was ask to describe pictures or re-tell narratives, he began to resist." Go figure. He's four years old!

Excerpted from the report, for your information and amusement:

Although Brad responded accurately with regard to production of grammatical skills, errors were noted in semantic abilities. For example, when asked to label an illustration of a group of men, Brad responded, "children." When shown a picture of several people trying to escape the rain and asked, "What's happening," Brad responded, "It's not raining." The examiner continued "It is raining. And the people are getting ____" and Brad responded, "frozen." He provided definitions for concrete or abstract concepts with inconsistent accuracy. When asked, "what's an apple - what do you do with an apple?" Brad responded correctly by showing the examiner eating. Error responses were predominantly reiterations of the targeted concept. For example when asked, "What does cold mean, "Brad responded, "I'm cold." Brad's motivation waned when asked to describe a group of illustrations depicting a family engaged in various tasks. He fell out of his chair and told the examiner that the task was "so so hard. It might take a very long time." With encouragement, Brad provided short sentences that in general described the pictures. For example, in response to a picture of a family washing the dishes, Brad responded, "She's making a recipe." In response to a picture of the same family setting the table, Brad provided, "He's making dinner." Brad substituted "he" and "she" pronouns thoughout.

The picture card sequence probe outlined in the language comprehension section of this report was used to assess Brad's formulation skills for sequenced activities. Brad experienced difficulty on this task. He repeatedly pointed out numbers on the cards that existed outside the illustrations. He appeared to focus on pictured details and neglected salient features of the illustrations. For example in the sequence that depicted a girl making her bed, the line that the sheet's border had created intrigued Brad. He ran his finger along this line and asked the examiner about the "rope."

That's Brad in a nutshell. Marching to the beat of his own drum. Falling behind in communication but getting ahead in numeracy.

As a parent reading the report, it was hard for me to figure out how much was attributable visual/verbal association problems versus semantics versus he's four years old and the exam was taxing on his attention.

The good news: The perpetual tough grader wrote:

In contrast to previous testing, Brad made several improvements in nonverbal and verbal pragmatic skills. During current assessment, Brad followed the examiner's gaze and engaged in joint attention.

He also did very well with object identification, sentence completion, syntax construction and pragmatic judgment, scoring within the average range for each of those assessments.

Quick Hit

2010-07-02T03:58:00.000-07:00

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!

Epilogue.

2010-06-25T04:17:00.000-07:00

Thanks for the well-wishes and the insight.

Brad actually passed his depth perception test. Imagine that. One result one day, and a different result six months later. Well that never happens! Except when it does.

At the end of the day, I've learned to place less stock in two-dimensional medical opinions, positive or negative, good or bad. The truth most likely lies somewhere in the middle.

Annual Physical.

2010-06-19T04:29:00.000-07:00

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!

I'm Back.

2010-06-13T06:38:00.000-07:00

Sorry for the prolonged absence. I'd provide a good reason but I don't have one. I just needed to focus on all of the rest of life's demands. I missed you all!

We're still here, and we're doing well.

Brad is coming along nicely. Still ever the joy to parent, mellow and happy as ever. I wish I knew what makes him so perpetually happy. I'd bottle it up and drink it myself.

On the cognitive front, he's reading now - not too shabby for a 4.5 year old. At this stage, it's beginner reading, mostly three letter words, but not just sight words or rote learning. He's legitimately sounding things out and reading new words. From a parenting perspective, our goodnight ritual is pure joy, with Jeremy and Brad taking turns reading kiddie books.

So I suppose I've been smelling the roses lately.

But all sun and no rain makes for a desert, doesn't it? On the speech/communication front, he was recently reevaluated by his private speech therapist (not the public school), and the results were not great. (Click here for his evaluation from a year ago.) His delay is still in the "severe" category for expressive communication. The SLP had expected him to progress to the "mild" category by now. But there were gains. The perpetually tough grader said he is showing a budding imagination. For those of you who want to understand how this is evaluated: "typical" children narrate a play scheme while they play. The first time Brad was evaluated, he didn't do this, but during the most recent evaluation, he did. But according to the SLP, he still isn't getting the big picture, choosing to focus on details and losing out on concepts and meaning.

On the motor front, he's progressing, I suppose. A big milestone: he can take off a shirt effortlessly now. He's pedaling, just on his big wheel. But he's as floppy as ever, and continues to be unmotivated to move, characteristic of hypotonia. He's been in a big boy bed for a year now, and he has never attempted to leave the bed on his own. Not once. He just waits for us to show up and tell him to get up. Maybe that's in part a routine issue. But still. The good news: he's overnight potty trained. Weird, right? He doesn't get up overnight to go potty; he just holds it in all night. This is me, not complaining.

On the physical front, his pigeon toed-ness seems to be getting worse, not better. His natural standing posture is with his feet twisted inward, a lot.

So what's new with you and yours?

Quick Hit

2010-02-01T04:14:00.000-08:00

Been away from blog for a week and will probably be away from blog for a little longer - pardon the absence. I hope all is well with my bloggy friends. I will be catching up next week.

I leave you with a quick hit: The Junior Meritocracy. It isn't PDD-related, but does relate to childhood development. And absurd parenting. Enjoy.

[Via Gawker: Dear Helicopter Parents, Your Gifted Child May Actually Be Dumb]

What To Expect Age 4, PDD Edition: Sensory-Motor

2010-01-23T10:04:00.000-08:00

As promised, a WTE segment on Brad's sensory and motor profile. But first, a "happy birthday" to Brad and a thanks to his well-wishers. He had a nice day.

And now he is four.

We've seen his motor coordination skills improve significantly over the last year. His OT thinks he may be "caught up" on the fine motor side, based in part on his grasp and his pedaling.

There's still something wonky going on though. The "ho-hum" profile still describes him well; the low tone is still there. In the Out of Sync Child, Carol Stock Kranowitz refers to this as the "gravity monster." Well, Brad is four and he's still fighting the gravity monster. Here's another clip we made recently, which illustrates his tendency to lean or flop.

(As an aside, I know, I need to quit my ill-fated attempts at making conversation while holding the camera; Brad is not the only one who has trouble multi-tasking.)

We still do "wheelbarrow" exercises on a regular basis to build up trunk strength. We make it a game: Brad hides his favorite ball, and he leads me to it with a wheelbarrow walk. Not to be outdone, Jeremy plays too.

On the sensory front, the sensory-seeking behaviors at this stage appear to be mostly limited to face-touching. Emotional regulation appears good; he's still our chill little guy; we bring him to restaurants, etc. all the time.

(Not) A Very Special Episode

2010-01-22T11:37:00.000-08:00

Just because.

A snippet featuring aspergian character, Abed, from the show Community.

And this.

And this.

And this.

What To Expect (Almost) Age4, PDD Edition: Communication

2010-01-15T09:45:00.000-08:00

As promised, a WTE post on speech and communication.

His most recent speech stats are here, but that doesn't really tell the whole story.

I'm proud to report...drumroll please...Brad is talking. Well that isn't exactly news, but it is a fair description of his ability. His progress on the speech front has been slow and steady. When exactly his speech took off is hard to pinpoint. At this juncture, he can express his needs and even his emotions, and his conversation skills are budding. Exhibit A:

And if it isn't obvious, the more he talks, the more he charms us with his sweet nature.

Not to take away from his progress, but there are still many challenges ahead. He's still scripting. Or something. For example, often our exchanges will go like this:

Me: "How was school?"
Brad: "The name of the day is Friday. Friday is a tuna fish day."

That having been said, on the whole, we're very pleased, and proud of his progress.

What To Expect (Almost) Age 4, PDD Edition: Introduction

2010-01-07T17:26:00.000-08:00

I've long complained that there isn't a What To Expect (WTE) book for PDD. So every now and then, I blog about milestones and such in an attempt to distill Brad's experience WTE style.

Which brings me to my next series of posts. With Brad's birthday approaching (he turns 4 on January 22), I'll be writing about Brad's progress in the following areas: speech, motor, social and feeding. This is Brad's PDD trajectory; it may or may not be representative of any other child PDD or otherwise.

What to Expect (Almost) Age 4, PDD Edition: Engagement

2010-01-06T17:45:00.000-08:00

In the coming weeks, I will be blogging about Brad's progress, but this week, I'm blogging about that which has been constant: his engagement.

Engagement is a difficult thing to describe.

I believe that Brad is easy to engage. In fact, several of his examiners (including his developmental pediatrician, his teachers and his speech language pathologist) have commended him on his ability to attend.

But the quality of engagement. It's different. It's not sharp, focused and sustained, like a typical child. You can see it in the videos.

This is the way it's been since he was a baby. I would never say "he's in his own world." But he's not always in my world either. He's somewhere in between, absorbing some pieces of his environs but disregarding others. I think this is part of what's vexing about A Little Bit Autistic. It's in between, neither here nor there.

Actual Story

2009-12-30T15:15:00.000-08:00

Excerpted from Cars: Driving Buddies:

...Mater was sad to see his buddy leave.
The other cars were sad, too.
So Mater and his friends went to the racetrack.
They helped McQueen.
But McQueen still did not win.
He helped an old friend finish the race instead.
Now he knew that winning was not what he wanted most.
What he wanted most were friends.

Imagined Story

2009-12-29T15:20:00.000-08:00

Excerpted from my imagination:

Mater and his friends gathered at the gas station.
They talked and laughed.
McQueen didn't join Mater at the gas station. Instead he studied aerodynamics.
McQueen's design could make him go fast.
McQueen went for a drive by himself.
Zoom!
He had so much fun driving that he forgot about the race.
Now he knew that winning was not what he wanted most.
What he wanted most were an atlas and a toolkit.

Corduroy learns a quadratic equation? A mom can hope.

2009-12-28T15:54:00.000-08:00

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.

Pass the eggnog.

2009-12-25T06:51:00.000-08:00

A Little Bit Autistic is taking a break this week. Best wishes. Merry merry.

DSM- V Epilogue

2009-12-18T04:11:00.000-08:00

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

2009-12-12T11:25:00.000-08:00

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

One is Silver and the Other Gold

2009-12-10T04:17:00.000-08:00

This is the third installment in a series on interventions. Installments one and two can be found here, here, here and here.

***

Part of PDD/SPD/A Little Bit Autistic, what have you, is a deficit in socialization. In my view, what to do about social impairment draws on medical science, treatment philosophy, but also norms, in the general sense. From a normative perspective, I'm of the mindset that it's okay to not be social. If Brad likes solitude, then I don't want to project my preconceived notion of happiness (having a lot of friends) on him. Also, if Brad is quirky, I have no interest in de-quirkifying him. Normal is overrated.

That having been said, I want Brad to be happy, and if Brad wants friends but doesn't know how to make friends, then I want him to have the facility to make friends and if school can further that goal, then I welcome the help. My goal then for Brad is the facility to make friends.

So that's a high level description of our goals, from a parenting perspective.

As for interventions, at school Brad's speech language pathologist joins Brad in class (including on the playground) and focuses on social pragmatics. In english, this means she facilitates play, including greetings, turn taking, sharing, and the like. Sample progress note, from his SLP:

Bradley did a GREAT job today on the playground! I was on the playground and I didn't even have a chance to go up to him to ask him if he wants to play hide-and-seek or tag. He came right up to me and said, "I want to play tag!". There were already two boys playing tag, so I told him to join them, and he just ran right up and joined in the game. He played for a few minutes and only needed a couple of prompts from me to keep going. Then, the boys started playing with a kickball, so I prompted him to keep after the ball in the group. The group then went over to play basketball and he needed prompts to keep up with the ball (someone throws the ball and all the kids run after it -- he just needed prompts to be more assertive and stay with the ball). He was actively engaged in games all of recess and feeling connected with the other kids. When you play tag at home, try having him chase you, and then teach him to run up to you and say in a nice loud voice, "Now you chase me!". After playing tag for a few minutes where he was chasing other kids, he wanted someone to chase him, and we practiced going up to a friend and saying, "Chase me!".

And this:

When I was in class today, I sat with Bradley and made bat, cat, and pumpkins with him out of play dough. We used the language for rolling, pulling, pushing down, etc. Then, I prompted him to show friends what he made, which he did when I prompted him to do so. I prompted him to use a louder voice when talking to friends. He also told his friend that he liked his cowboy costume!

To me, this seems like a nice, safe way to introduce Brad to social situations. I don't see any downside.

That having been said, there are a two social interventions which I disapprove of for Brad, from a normative perspective, and my disapproval is actually in Brad's IEP: (1) no "look me in the eye"; and (2) no social scripting.

Regarding "look me in the eye", at issue I believe is working memory. If you asked me to do long division in my head, either I wouldn't be able to do it, or I'd have to close my eyes or look away while I think about it. This is a normal response. For children who have a weak working memory, a lot of ordinary interactions tax them from a sensory perspective like long division taxes me. That's the way I see it. Also, I've read enough first hand accounts of autistic adults who recall being forced to look so-and-so in the eye, and it's a source of anxiety and instills a sense of failure. When Brad was two and a half, the specialty provider who came to administer Floortime starting doing the face touch, where the therapist gently touched Brad's face under the chin when he wouldn't make eye contact. I told her to stop.

As for social scripting, I just don't like it, and I don't think it's necessary for Brad. Social scripting refers to teaching a child to say, for example, "do you want to hold my hand and walk with me?" the idea being that typical children know to do this naturally and atypical children need to be taught. My thought is that holding another child's hand should come from a place of joy and affection, and not from a place of "if I do X, I'll get external reward Y." But, again, this is normative, in part, so I say live and let live. If another parent prefers that their child learn social scripts, that's fine. For me, I don't want that for Brad. As for prevalence, I don't know about other school districts, but I know that a few children in my district are taught social scripts (and it shows).

Quick Hit

2009-12-05T04:46:00.000-08:00

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.

Label Junkies: University Edition

2009-12-02T17:58:00.000-08:00

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.

Still recovering...

2009-11-27T13:08:00.001-08:00

...from a triptophan hangover...

Gobble, gobble. Best wishes to you and yours.

Life is a Highway: Part I

2009-11-17T17:16:00.000-08:00

This is the second installment in a series of posts on interventions. Last week, I explored a speech therapy exercise that Brad has tried. This week, I muse about something we haven't tried. This installment is divided into two parts.

* * *

"[I]t is remarkable that an intervention that is easily defined and implemented can have important lasting benefits at least to the end of middle school for all students."

To what is the quote referring? Floortime? Occupational therapy? Behaviorial therapy? Diet? A supplement?

Answer: None of the above.

The excerpt is referring to an intervention that is elegant in its simplicity: classroom size. Science Daily reports:

Small classes in early grades improve test scores in later grades for students of all achievement levels, but low achievers get an extra boost. That's the finding of a study on the long-term effects of class size in the November issue of the American Journal of Education.

The study followed 11,000 students and found that:

...small classes—13 to 17 students—are most effective when they are consistent from kindergarten through third grade. Students in consistently small early classes had substantially higher test scores in grades four through eight than students who had been in larger classes. Students at all achievement levels benefited, but low achievers showed stronger benefits in reading and science.

Which is interesting because at least one noted blogger has hypothesized that "sensory processing disorders are probably among the most common reasons children underachieve in school."

Which is also interesting because my school district is amidst a budget crisis and a school crowding problem. The town I live in is having an override vote in December to fund some needed school repairs. If it doesn't pass, the children from the sick building may be forced to fan out into the already crowded grammar schools.

While I can't control how my town spends its money, I can control how I spend mine. Which is to say, I can send Brad to private school, if he can get over the admissions hump and can function without an aid.

I may look back at this very idea as crazy talk, but for now, it's something I'm at the very least considering down the road. Not for preschool, but for K-5 or K-8, when classroom size makes a preciptious jump in the public school setting. Private school offers small classroom size and appreciation of individual learning styles, and some "typical" private schools offer special ed-type services, including services for language and social pragmatics.

That having been said, my husband and I are both public school graduates and believers in the public school system. For most.

Life is a Highway: Part II

2009-11-16T17:03:00.000-08:00

Education is a series of roadways. A metaphor. Indulge me.

Public school is a freeway, heavily trafficked and, at times, congested. There are several lanes, each with posted speeds. Drive too fast or too slow, and you're violating the law, which is strictly enforced by the police. The good news is that if you run out of gas or need help, highway patrol is there to assist. And if you need to drive in the slow lane, that option is available too. If you are at least a moderately fast car, the freeway is the best way to get to your destination.

Private school is a quiet country road. You can drive at your own pace; there is no minimum speed. You can drive fast on some stretches of the road, and slow on others. And when you drive slow on the country road, they don't call it "the slow lane." The problem is, if you need help or break down, you're on your own. There's no highway patrol, no one to assist. And on certain country roads, they won't even let you on the on-ramp unless your driving proficiency is at a minimum.

Homeschool is a parking lot. You can learn to drive expertly there, with zero risk of danger and no pressure to drive fast or slow. But you don't get to take in much by way of scenery, and you don't learn how to navigate when there are other cars on the road.

Syllogism-ism: Part I

2009-11-12T17:48:00.001-08:00

As I blogged last week, lately I have been concerned about Brad's ability to make those higher order connections. Recall Brad's speech evaluation over the summer. I was a bit - shall we say - prickly in the immediate wake of the debrief with the speech language pathologist. As I blogged, she told me that Brad was rigid and lacked imagination.

So I was reactionary. That's my M.O. when some one tells me something I don't want to hear. But to give me credit, over time, I was able to be objective about the evaluation and appreciate what she was trying to tell me; my reactionary phase was short-lived. Herein lies what separates a denialist from a realist.

She also told me something I hadn't previously considered: he's impaired in verbal reasoning.

"What???" I asked. No, Brad has a communication impairment but his ability to reason is perfectly in tact, I thought. Reasoning and language are totally separate areas of the brain. I read that somewhere. He has a language impairment. And a sensory issue. And a social issue. And poor working memory. But reasoning is intact. It's that simple, I reassured myself.

I hate it when I'm wrong.

After originally dismissing the SLP, I have come to believe that she is correct: Brad does have an impairment in verbal reasoning. What that means (disorder versus delay) and how it will play out, I'm not sure. But that he has an impairment is pretty obvious now that it's been brought to my attention.

Syllogism-ism: Part II

2009-11-12T04:01:00.000-08:00

Cue the syllogisms.

To "treat" his impairment in verbal reasoning, Brad's private speech language pathologist engages Brad using printouts like the one pictured above.

It starts with W questions, who, where and what.

Then it moves to "what happened".

And then what I call the syllogism prompt: "what will we do?"

Every week, they work on a new "story" that follows this basic interactive format. The column on the left (the W questions and the syllogism prompt) does not change. The SLP leaves me a printout so I can reinforce and practice in between sessions.

Goals, by their nature, should be something to strive for, not something already mastered, and that's why I really like this intervention. Currently, Brad doesn't really get it. He can't deduce, or problem solve yet. That last "what will we do?" question consistently trips him up. But he even though he can't formulate deductive reasoning, I think he is starting to comprehend these little syllogisms, perhaps in a passive way. But comprehension isn't for nothing. Little by little, I like to think that this type of intervention does exercise those tenuous "higher order" synapses, perhaps keeping them from dying off or causing them to flourish.

I will close with a proof point: I set the table the other day and forgot to set cups with the kids' drinks. Brad: "Mommy, you made a mistake!" (Ha! And it won't be the first, Brad.) Now that's deductive reasoning.

Added: The printouts pictured above were created with BoardMaker.

"Pruning"

2009-11-06T04:05:00.000-08:00

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.

Happy Halloweenie!

2009-10-31T17:53:00.000-07:00

We vax.

2009-10-30T04:04:00.000-07:00

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.

2009-10-25T11:41:00.000-07:00

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.

The best things in life are free.

2009-10-22T17:23:00.000-07:00

Recently, I asked Brad's occupational therapist for her thoughts on treatment, short-term and long-term. Our ration of insurance-approved visits will be up in February 2010.

Short term, she's going to continue strength building, grasping exercises, fine motor exercises and the play therapy (Floortime-ish).

For the long-term, when our insurance benefit is up, her sage advice: "Play outside a lot, and have him go on a lot of playdates."

"No, really," I said.

"Really," she said.

"What about occupational therapy? Or physical therapy? Services???" I stammered. "He must need something. Look at him. He still has terrible postural stability."

"Waste of time and money," she replied. "You're buckling him up, and confining him in a car, to drive him somewhere so that he can exercise. Plus, a one-on-one service hour deprives him of play with his peers."

At this stage, I can't say whether Brad's OT is right or wrong, but her common sense advice does resonate with me. Compare and contrast to the advice of Brad's private speech language pathologist (who happens to be quite thorough). Brad's SLP told me Brad's IEP is wholly inadequate and that he needs more service hours at school. Turns out, many children in my school district with a diagnosis do get more service hours in an ABA based program - even the borderline are-they-or-aren't-they PDD kids. Brad's SLP relayed this recommendation to me over the summer, and I have ignored her advice for the very reason Brad's OT cited: more one on one service time at school deprives of playdates and freeplay with Jeremy, which I think is valuable, socially - more valuable than being holed up in a classroom.

So for the time being, I'm inclined to place more stock in the common sense approach of Brad's OT than his SLP. Am I right or wrong? Only time will tell.

Prevalence of Prevalence Statistics

2009-10-16T11:19:00.000-07:00

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 = ?

2009-10-09T08:17:00.000-07:00

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

2009-10-01T04:11:00.000-07:00

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

2009-09-30T07:54:00.000-07:00

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

2009-09-29T08:08:00.000-07:00

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.

Phoning it in: Google Edition

2009-09-25T04:11:00.000-07:00

Hey all. This week, it's a filler post on blog stats. Here are my unscientific observations regarding my blog traffic, courtesy of Sitemeter:

Traffic: 40-60 unique visitors per day, on average. I don't think sitemeter picks up mobile devices though. Atleast, I don't think it picks up my mobile.
Locale: in the US, heavy concentrations from the east and west coasts, and smatterings from the midwest and Texas. Outside of US: primarily Canada, Australia and UK.
Referrals: about half come my way by Google search (and Bing and Yahoo), and the other half via other blogs and bookmarks.
Top Google searches (unscientific): "PDD NOS", "PDD NOS RECOVERY", "PDD NOS PROGNOSIS", "PDD NOS POTTY TRAINING", "ASD AND DCD", "SPD AND RECOVERY", "AUTISM AND RECOVERY", "ASD AND DSM-IV"

Back To School

2009-09-18T04:05:00.000-07:00

I'm writing to report that there's not a whole lot to report. Which is good, I suppose.

We're back to four days a week at integrated pre-school ("integrated" meaning special needs and typical peers). As I have blogged, Brad is in a great program with a rich curriculum, including motor group and one-on-one speech. It wasn't all good news last year though. In last year's class, he had difficulty keeping up and tended to withdraw.

Over the summer, Brad had a good teacher, who REALLY REALLY understood Brad and appreciated him. (Well, technically, I think the summer program is camp, but it was at the same place.) Anyway, according to her, Brad came out of his shell during the course of the summer. Brad showed her that fullness of expression that we see around the house. She loved him. Well maybe she loves all of her students, but still, I was enjoying her Brad appreciation.

Anyway, out with the old and in with the new. His teacher for this year (September through May) has yet to bond with him on that level. But I'm hopeful they'll get there. And the class mix seems to be better for Brad, in terms of age and temperament and whatnot.

One thing new on the roster: they might add a twist to Brad's one-on-one speech pullouts. They suggested one-on-two, meaning one speech therapist for two children. To facilitate a friendship and administer therapy at the same time. Call me crazy, but I like that idea a lot.

Brad-Ism

2009-09-11T04:07:00.000-07:00

"I've got a wedgie, mommy."

-Brad, informing me that his shirt tag was uncomfortably rubbing the nape of his neck.

I know this is what he was trying to convey because he gestured to the tag, not his underwear.

Brad has a point. The tag is a clothing-induced source of discomfort. And they say our kids have weak generalization skills.

And while we're on the topic, why isn't there a word for the uncomfortable sensation a tag creates? Maybe our children aren't language-impaired. Maybe our language is autism-impaired. Stick that in your pipe and smoke it.

TGIF.

Phoning It In: Back to School Edition

2009-09-04T08:46:00.000-07:00

Back to school went well for Jeremy and Brad. Nothing remarkable to report, other than OMG Jeremy started kindie! *sniff* But that's off-topic.

Brad's first day of school (morning of) interview:

How was back to school for you and yours?

Insurance Update

2009-08-28T11:38:00.000-07:00

We won our insurance appeal. It took five months and two levels of appeals, but we won. Brad will be starting occupational therapy again soon.

Guest Blog By DH

2009-08-21T04:19:00.000-07:00

Readers and lurkers,
Just a quick note to let you know my father has been in the hospital for the last few weeks. He's had a heart attack, a gallbladder removed and a stroke, and is doing as well as can be expected. I'm writing to let you know I'm over capacity in the short-term. So if I haven't stopped by, that's what's up. I'm drained, physically and emotionally. Tapped out.

My husband is picking up the slack this week. Thanks DH.

* * *

I don't often encounter references to the autistic spectrum in what I read on the internet, mainly because I flock to blogs and news sites about things like fantasy hockey, sports memorabilia, and .....cough cough....pro wrestling (yes, I know it's fake).

One of my favorite stops when surfing the web is the twoplustwo forums, which relate to news, strategy, viewpoints and gossip about poker.

Among the threads I recently read was one questioning whether the 2008 World Series of Poker main event champion - a young man named Peter Eastgate - is autistic. It was an odd question, but as people pointed out not an entirely unconscionable one given how quiet, calm and focused Eastgate has come across on TV, particularly as compared to his generally brash and boorish counterparts. Also notable was how much he maintained his composure when he clinched his victory, literally barely reacting after becoming the youngest main event champ ever and winning millions of dollars in the process.

Much to my surprise and enjoyment, the question prompted quite a discussion, one by and among people about autism who didn't specifically come there with an autism agenda. Instead, it was just poker players and fans talking about autism like they would about health care, Hannah Montana, the economy, or porn. Sure, some of the familiar debates emerged, but it was interesting to read such a full range of reactions and viewpoints, complete with doses of hate, ignorance, confusion, compassion, curiosity, and humor.

Am I the only one who finds reading non-agenda-laden debates and discussions like these about autism (or other subjects for that matter) refreshing in a way? To me, in terms of autism, they're a more representative microcosm of what my son may encounter in the real world.

Oh well, enough rambling. Here's a link. Be forewarned - it meanders at times, but it's a fascinating read, particularly at the beginning and towards the end.

Phoning it in.

2009-08-14T09:16:00.000-07:00

No time for any reflection this week, so I'll leave you with a video. TGIF!

Go sox!

2009-08-07T04:32:00.000-07:00

Here, in New England, we are said to be stoic relative to others in, say, the midwest or the south. We don't feign pleasantries. We're not warm and welcoming to people we don't know. We keep to ourselves. As a general matter.

Unless you're wearing a Red Sox tee shirt, in which case puritanical stoicism gives way to two other Massachusetts traits: meatheaded-ness* and sports fanaticism. For the uninitiated, Massachusetts happens to be some sort of meathead mecca, for reasons I don't fully understand. Anyway if you're wearing a Red Sox tee shirt and it's the day of a game, perfect strangers have license to make remarks and engage you in conversation.

Which is fine, unless you have have a speech delay. I have blogged of my time as what I dub a "smile bully"; when Brad was 3 months old, I wouldn't leave him alone until he smiled. Well, what we have here are conversation bullies. People who won't be satisfied until they have elicited some sort of remark from Brad, like his favorite player or the anthem "go sox." Brad, of course, wants nothing to do with these well-intended people, understandably.

So I have resorted to taking the Red Sox shirts out of his rotation during game day. It's all I can do. Do you or yours ever get assaulted by conversation bullies?

*Patent-pending.

Impervious No More?

2009-08-07T04:20:00.000-07:00

I have long speculated that Brad is slightly impervious to pain. He just doesn't seem to react to tactile input the way a typical child does.

Until now?

The litmus test I use: taking a bath.

There are certain near-universal truths about typical children. One such truth is that toddlers become upset if they get soap in their eyes, even if it's "No More Tears." Not Brad. Since he was 18 months old, I've waited for him to express upset when I rinse his hair. Nothing. Just smiles and laughter. Sometimes I know soap is in his eyes. I look at him suspiciously. Just smiles.

And now, finally, it's happened: every time we rinse, he cries. Not that that's a good thing! Of course, I don't like to see Brad upset. But I can't help but wonder if one of those elusive neurological synapses is finally connecting. By my limited anecdotal experience, this usually happens closer to 18 months. Brad is three and a half. But this is me, not complaining. Better late than never.

The DSM-V Saga Continues

2009-07-30T17:04:00.000-07:00

You can't make this stuff up.

To recap: Certain members of the American Psychiatric Association (the "APA") have proposed sweeping revisions to the DSM-IV, which is used to diagnose, among other things, autism. With respect to autism and other conditions, the proposed DSM-V will include "dimensional ratings" and "subclinical" designations. This is said to represent a paradigm shift. The chair of the DSM-IV task force, Allen Frances, sharply criticized the proposed revisions and the lack of transparency of the process. The APA came out swinging with its rebuttal, in which it accused Frances of bias and financial motivation: the DSM V revisions will render the DSM-IV handbook, which Frances authored, obsolete.

Update:

Predictably, Frances took umbrage. Those royalties he'll be forfeiting when DSM V is published? $10,000 per year. Which, for him, is probably nothing. He doesn't write that, because that would be crass, but that's the implication. Frances also challenges the APA to be tranparent and make public the exact wording of the proposed revisions, and the research in support thereof.
One of the members of the Workgroup on Disorders and Childhood and Adolescence has resigned in protest. This is the group that is deliberating over the inclusion of sensory processing disorder in the DSM V. She writes:

"I am increasingly uncomfortable with the whole underlying principle of rewriting the entire psychiatric taxonomy at one time. I am not aware of any other branch of medicine that does anything like this....There seems to be no good scientific justification for doing this, and certainly none for doing it in 2012."

So even if SPD were included in the DSM V, who is going to respect it? The process appears to have little integrity.

Brad in motion.

2009-07-23T17:01:00.000-07:00

A quick update on motor development:

We have pencil grasp!

We have pedaling!

Brad's motor developing is taking off. I wouldn't say he's caught up, but he's moving in the right direction (puns intended). That having been said, his fine motor is still a little wonky, and his tone is still low.

And we have another piece of the puzzle: turns out he has an orthopedic problem - he's pigeon-toed. His left foot turns in when he walks. His pedi assured me this is orthopedic, not neurological. In addition, he's flat-footed, and this apparently is neurological; it's like having low muscle tone in the arch of his foot. What are the odds of having both a neurological issue and an orthopedic issue affecting gait? In any event, this explains his walk.

The good news is that being pigeon-toed is very much a condition he'll grow out of on his own with no therapy. In the old old days, pedis used to prescribe orthopedic shoes. In fact, I wore orthopedic shoes when I was a child (for what, I have no idea). Turns out, those ugly shoes aren't actually therapeutic. Just ugly.

And so, I am on a mission. To keep Brad's therapy roster free of ugly shoes, actual and symbolic...

"Excuse me, Mommy."

2009-07-15T19:58:00.000-07:00

Music to my ears.

After what has felt like a verbal plateau for the last six months, it appears Brad's speech is taking off again. He's surprising us lately with a fullness of expression and a budding personality. My fave: "excuse me, Mommy", used appropriately when he wants my attention. And if I don't attend right away, he keeps saying it, with increasing volume. And I'm only too happy to pay attention.

Speech Assessment

2009-07-15T18:13:00.000-07:00

Now for the numbers.

I received a full evaluation report from Brad's private speech pathologist. The conclusion:

Brad presented with a mixed profile in receptive-expressive language skills with average receptive and expressive vocabulary, mild deficits in direction following, question comprehension and verbal reasoning, mild deficits in semantic organization, and severe deficits in language formulation for a variety of purposes. Deficits were also noted in Brad's symbolic play, as he did not engage in pretend play and dmonstrated some rigid and atypical play behaviors. With regards to speech skills, Brad presented with a mild phonological disorder with a motor component.

Drilling down:

Behavior: "bruxism" noted. That's medical-speak for teeth grinding, which is self-stimulatory. He does this quite a bit now. Also observed: reduced eye contact. But: "Brad maintained selective and sustained attention for the entire two-hour assessment and complied with both play and language based tasks."

Play: Rigidity observed. For example, "when given a chair, table, tablecloth, fork, knife, plate and doll, Brad placed the doll on the chair, pushed her to the table, and then set the table. He did this silently and did not narrate his play scheme or interact with the doll." Tough grader. I guess I should get used to it.

Receptive language:

The Peabody Picture Vocabulary Test-4: Brad scored 88. The mean is 100 with a standard deviation of 15
Verbal Comprehension Scale A from Reynell Development Language Scales: Brad scored 82. The mean is 100 wiht a standard deviation of 15.
Informal probe: Answers yes/no and what questions accurately. Inconsistent accuracy for where questions. Innaccurate for why questions.

Expressive language:

Expressive One Word Picture Vocabulary Test: Brad scored 98. Mean is 100.
Expressive Language Scale from the Reynell Developmental Language Scales. Brad scored 70. The mean is 100 with a standard deviation of 15. This is by far his lowest score. Based on this, he was judged to have a severe expressive language impairment. "Error responses consisted of visual/verbal association errors. For example, when asked to label and illustration of a window, Brad responded 'book.'" But it was only pictures that tripped him up. He scored 100% identifying actual objects, and 63% with illustrations.
Informal analysis: Possible language organization and/or word retrieval deficits. "Several lengthy response latencies were noted during both word-level and sentence-level testing. Response latencies ranged from two to eight seconds. this degree of response latency might have resulted from mild word retrieval deficits. Further characteristics of word retrieval difficulties were noted in Brad's use of non-specific terminology throughout assessment. Characteristics of language organization deficits were noted in difficulties disambiguating illustrations of visually similar objects, such as a feather and a leaf, and reduced use of specific vocabulary to describe part/whole relationships."

Speech

Goldman Fristoe Test of Articulation- 2. Brad scored 108. Mean is 100. Mild speech dysfluency observed.

Potent Potables for $800

2009-07-07T09:22:00.000-07:00

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

2009-06-30T11:38:00.000-07:00

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

Not quite robust, but definitely not barren...

2009-06-28T08:22:00.001-07:00

...is how I'd describe Brad's imagination. Here he is, in action:

Me, personally, I don't get a rote or scripted vibe, but admittedly, I'm biassed.

Me to Brad's SLP: He's Just Not That Into You

2009-06-23T18:05:00.000-07:00

Or your dolls.

Allow me to explain.

I had Brad evaluated last week for private speech therapy. She raised the usual litany of concerns. Expressive language delay. Receptive language delay. No surprise there. What surprised me was her observation that his play is rigid and rote, and he has no imagination.

Oh really? I see him play with his brother all the time, and personally, I see mostly natural, unscripted play, with a lot of laughter. Brad has a sense of humor, albeit an immature one. Beyond that, I see a budding imagination, particularly when we use pretend food or stuffed animals.

The basis for the SLP's observation: it's the dolls.

The SLP did what every examiner does - she reverted to her preconceived notion of what inspires imagination in a normal kid. But Brad does not have an emotional connection to dolls or plastic representations of people. Why would he? In the world according to Brad, babies poop, cry, grab his stuff and don't share. He's around a baby - a sibling of one of Jeremy's friends - a few times per week. When he sees the baby, Brad goes right into bunker mode, protecting his booty of toys from the perceived threat because that's all that a baby is to Brad at this age.

So he lacks the emotional connection but he knows from past experience what to do with dolls. He puts them to sleep and says "shhhhh." He has memorized the play script. And being the pleaser he is, he happily goes through the script on request.

Fine, maybe I'm rationalizing. But the way I see it, he's acting in a rigid manner because we've reduced freeplay to an instructer-led service delivery model. Call me crazy but maybe play isn't always best when it's administered by a trained professional.

Not to worry though. I'm not shunning speech therapy. Brad is starting during the second week of July, two fifty minute sessions per week, covered by insurance at least for now. I plan to have a little heart to heart with the SLP before she starts however.

Quick Hit

2009-06-19T12:31:00.000-07:00

Final research is under way to support inclusion of sensory processing disorder in the DSM-V. For DSM-V junkies, this falls under the Disorders of Childhood and Adolescence work committee (as opposed to the "neurodevelopmental workgroup" which is overseeing the autism revisions).

Comment Trolling on ParentDish, Part II

2009-06-17T18:30:00.001-07:00

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.

Comment Trolling on ParentDish, Part I

2009-06-17T17:15:00.001-07:00

In a departure from the usual fare of pubmed expositions and autism books, this week I feasted on blog comments. And what a feast it was.

The topic: a recent study that links ADHD meds with an increased risk of sudden death, a significant and controversial finding. The forum: ParentDish. The relevance: kids who are A Little Bit Autistic often stuggle with attention when they enter school.

Here are the best chestnuts, which are far more compelling, colorful and diverse than any editorial I could put together:

Wish Belkin 6-16-2009 @ 8:20PM
This is insane. If there was one chance in a bazillion, I wouldn't let my kid within ten miles of this poison.

Sarah 6-16-2009 @ 10:47PM
Wish Belkin?Then you can not possibly know what it is like to have a child with ADHD. Without the medicine my son is on, he can not attend school, he can not have friends and he is not happy. I think this article should have listed which medicines increase the risk of death instead of saying the blanket term "AdHd meds."

rph94 6-17-2009 @ 12:33AM
As a pharmacist, I have probably seen only one or two true cases of adhd that would require medication - the million other cases seen are from teachers with over crowded classrooms or parents who don't want to deal with a child who is "busy". I myself have a boy who is exceptionally "busy" but with consistency and structure he has done just fine. He is a honor roll student. At school, I let his teachers know right off the bat that he has to stay busy. When he is finished with something - give him a project to do or another paper. I agree with those of you that have tried other measures - try cutting out all sugars and many times the child can be lactose intolerant. Try a coke cola in the am - it has the same stimulant effect as the meds. I am scared for the all of the children that are wrongly placed on these meds because of the side effects and long term effects.
michelle 6-17-2009 @ 1:49AM
Well then you must never have a child with ADHD!! Your child is miserable, and out of control ALL THE TIME!!! It's not fair to him OR to the rest of the family...concider yourself blessed...

Kelley 6-16-2009 @ 10:40PM
My 18 yr old son died in 2007 suddenly. He had been on adderrall for approx 3 years and the doc had increased the dose not long before he died. He had had cardiac tests prior to going on the drugs, but the doc really dropped the ball on follow up. I wish I would have known enough to insist on more consistent follow up, but I trusted our doc. Parents, Be very cautious of these drugs. I only wish I had. I don't want to see anyone else go thru what we have. Even if sudden death is 'very rare". I lost my only child and it was unnecessary.

Christine 6-16-2009 @ 10:59PM
How can it possibly be that 2.5 MILLION children are on these medications? Is this in place of parents and learning to behave? I CANNOT believe that 2.5 million American children are all defective unless they are just totally neglected, spoiled brats. I am sorry, I don't believe that most children should be medicated against their will.

chris 6-16-2009 @ 11:10PM
I was on ritalin for 7 yrs and became bipolar its not fair to the kid to experement with his brain,now Im taking Lamectle which is a wonder drug but Im an adult now and its my choice I turned down alot of drugs trying to combat bipolar,because they made me feel weirder,up or down or all around ,sweeden has outlawed ritalin,and I agree It burns up the synapisis in the brain ,sorry for me oh well,but I go off about this subject,the kids have it forced on them and nobody knows how they actualy feel like,it geeks them out,and the parents think because their being quiet its working, wrong very wrong

Karen 6-17-2009 @ 12:06AM
Parents who are dead set against Concerta/Ritalin/Aderol have never had a child with ADD/ADHD-Audio or Visual Processing Disorders. I was like the parents who were dead set against it....it was learning the facts, learning that taking red40 away, and any sugar prodects helped. My son was reading at the 1st grade level in 3rd grade....once he started Concerta, his reading level soared to a 6th grade reading level. Has it helped, without a doubt. But a parent MUST be proactive in their childs health care, and taking them to their doctor for check ups. To the parents who are prejuding us parents who are on this medication, don't....you have not walked in our shoes.

Not The Same Lisa 6-17-2009 @ 3:18AM
I am 31, I was "diagnosed" at 3 (1981) with ADHD. I can honestly say that 98% of children are misdiagnosed. I don't even know where to start. . . I was put on kiddiecrack, I mean ritalin, at 3 years old! I can only imagine the long term effects, I was on it until I was 13. It was a push by the school mostly, because they didn't know what to do with the genius that was failing everything but art and PE, and yes public schools get perks from the government the more kids they have with conditions like ADD on medication. Hence, idependant doctor's opionion always. There are many alternatives to treatment, medication should always be a last resort, because it leads to a long time drug use. Many ADD children go on to be medicated teenagers with manic depression, and other mental disorders. The ones that don't get on track grow into non-productive adults, still on medication or hooked on illegal
drugs. Seriously elvaluate your situation before you give out the medication, because they can't even tell you what the long term effects are of what they are giving your childen, to turn them into managable,zombies. ~ From Someone Who Knows

SPD Versus PDD: The Battle of the Vague and Nondescriptive Labels

2009-06-10T18:47:00.000-07:00

This chapter of The Mislabeled Child left me wondering: which label is better for a child like Brad - severe SPD or mild PDD? Brad is so borderline that either label probably fits. Answer: they both suck! No, really, they do. But which sucks more? Consider the following:

Heterogeneity: PDD-NOS can describe anything under the sun, from the severe to the mild end of the autistic spectrum. SPD, likewise, can describe a child whose symptoms mostly present as emotional dysregulation with no cognitive difficulties to children like Brad who are autistic-like (or what have you). Winner: tie, they both suck.

Respect by schools: here, the edge goes to PDD-NOS. The schools don't respect SPD as a diagnosis because it's not formally recognized in the DSM-IV. Winner: PDD!

Ill-conceived notions for treatment: As I learned firsthand, the prescription for treatment for PDD is ABA, and not just ABA, but intensive 25-hour per week ABA. SPD has some weakness in this area too: people have the preconceived notion that SPD kids don't like tags, bright lights and loud noises. (As I blogged, Brad doesn't have an issue with any of these things; on the contrary, he needs more than average stimulation to reach an ordinary state of arousal.) That having been said, I'll take dim lights for Brad (which he doesn't need) over ABA, thankyouverymuch. Winner: SPD!

Diagnostics: PDD-NOS is widely diagnosed by a whole host of professionals, including developmental pediatricians, psychologists and neurologists. SPD? I don't even know. The Eides diagnose it. Occupational therapists diagnose it. Who else? Anyone? Winner: PDD!

Overall: I give the edge to PDD over SPD. What say you, readers?

The Mislabeled Child: On Sensory Processing Disorder

2009-06-10T17:58:00.000-07:00

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.

Sensory Processing Disorder: Ho-hum Revisited

2009-06-09T18:32:00.000-07:00

Here, I will attempt to construct Brad's sensory profile:

"Ho-hum"/Sensory Disregarder (more on the profile here):

Brad appears to react less intensely to sensations than a typical child. For example, a month ago, Brad and Jeremy were playing with a balloon which, predicably, popped. Jeremy (typical, age 5) shrieked and then cried. Brad was completely unfazed.
I can't say he's impervious to pain, but he doesn't cry a lot.
We've been taking Brad to restaurants for as long as I can remember and he has never once melted down or appeared upset or overwhelmed by the noise.
He has the issues with muscle tone, postural stability, binocularity and bilateral coordination that characterize dyspraxia and underresponsivity.

Vestibular dysfunction: going back as early as 24 months, I observed his habit of turning our play balls into exercise balls. He puts them under his bum and bounces for vestibular stimulation.

Procieptive dysfunction: He loves swimming, and I think that has something to do with proceiptive input; he flaps (mostly when he's excited or aroused); and he has a habit of flopping on his favorite ball. (Yes, he has a favorite; it's orange; he gets pissy if anyone other than him so much as looks at it.) I think the flopping on the ball has to do with procieptive input (versus when he's bouncing on it, which is vestibular or motion).

Tactile: he touches his face a lot, mostly near his nose and his mouth. His school OT said it may be because there are a lot of nerve endings there.

Auditory: he doesn't respond to name consistently; sometimes seems aloof.

Visual: atypical eye contact.

Taste/smell: nothing that I've observed.

ASD Labeling: The Next Generation

2009-06-05T04:11:00.000-07:00

Let's inventory some of the labels that may be ascribed to a child who is A Little Bit Autistic. There are the medical terms:

Asperger's

PDD-NOS

Dyspraxia

Developmental Coordination Disorder

Sensory Processing Disorder

Mixed Expressive/Receptive Language Disorder

Communication Disorder

And the informal terms:

"Autistic like"
"Quirky"

A Little Bit Autistic :-)

And now there is. Wait for it....

"Subclinical AS Symptoms"

Where to start.

In March, I blogged about the February 2008 summit in conjunction with the DSM-V "Neurodevelopmental Workgroup." Now, the April 2009 report has been published, and it is quite provocative, in this bloggers opinion. Unless I'm missing something, notably absent are "asperger's" and "PDD-NOS."

With respect to PDD-NOS, I say "good riddance", but asperger's? The reasoning appears to be that the asperger's/HFA differential diagnosis has little integrity. Anecdotally, spectrum bloggers often identify as "spectrum" or "autism" rather than "asperger's" or "HFA" for this very reason.

In the place of autism, asperger's and PDD-NOS are:

Most Severe ASD

Moderately Severe ASD

Less Severe ASD

Not to leave any stone unturned, the proposed DSM-V revision provides for two off-the-spectrum designations: "Subclinical AS Symptoms" and "Normal Variation." There it is.

Click here to learn more.

I think Brad is currently on that line between "Less Severe ASD" and "Subclinical AS Symptoms."

"Subclinical AS Symptoms." Learn it. Love it.

[Via Change.org]

Updated June 6, 2009

Update: Recovery

2009-06-04T19:18:00.000-07:00

Just a quick update to this post on recovery. I'm not the only one calling bullshit on this one.

Michelle Dawson, who attended the conference at which Deborah Fein presented, similarly notes the disconnect between the media reports and the actual study [via The Autism Crisis]:

...But in her presentation, as in her abstract, Dr Fein did not associate the findings she reported with any kind or quantity of autism intervention or treatment. When
speaking at IMFAR, she expressed doubt that this in fact could be done.

Dr Fein clearly added more information when speaking with the media. She expressed her view that recovery from autism, what Dr Fein calls "optimal outcome," was associated with early intensive ABA-based autism interventions. Like all researchers, she is free to say what she wishes to the media. However, her statements relating kinds and amounts of intervention to outcomes in autistic children are not supported by any of the data she chose to present at IMFAR 2009, either in her oral presentation or in a series of related posters.

Indeed her study design does not permit any conclusions about effectiveness of interventions, no matter how "effectiveness" is defined. She has not conducted a true experimental design in which well-known sources of bias can to some degree be accounted for and therefore the effects of interventions, their benefits and harms, can usefully be assessed.

Taking creative liberties with the media. What the heck right? There's no harm to bandying about the term "recovery" and linking it to a therapy when that link is unsupported. It's not like parents are looking for hope or anything, are they?

People are starting to realize that the emporer has no clothes. Even mommyblog "ParentDish" expressed skepticism. Ditto for a popular professional association newsource I read. Deborah Fein does a disservice to her patients/subjects and the cause of promoting ABA mandates. You don't gain credibility with hyperbolic claims based on fantasy.

Potent Potables for $400

2009-05-27T15:20:00.000-07:00

Brad is going through an interesting stage in his language development: he's taken to phrasing his observations in the form of a question. Like jeopardy. On infinite loop. 24/7

Favorite questions: "what color is it?" "is it blue?" "is it tan?" and "how many are there?"

Don't get me wrong though: I'm loving it. It seems like a normal developmental stage, just a little delayed and exagerrated, which is an emerging pattern.

The Mislabeled Child: On Autism Spectrum Disorders (ASD)

2009-05-26T17:10:00.001-07:00

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:

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.

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.

Close but no cigar.

2009-05-21T08:22:00.000-07:00

"You're eating like a big boy."

-Brad, describing me eating a sandwich without taking it apart.

ps I'm on vacation for a week...have a good week everyone!

A Little Bit Autistic presents...

2009-05-15T08:57:00.000-07:00

...couch surfing*

*Patent pending.

Recovery redux.

2009-05-09T07:34:00.000-07:00

Recovery junkies know about the three studies from 2006 through 2007, and the 2008 study, each of which demonstrates that children who meet the diagnostic criteria for an autistic spectrum disorder can later "lose the diagnosis." Now comes yet another study (which is still ongoing) evidencing the recovery phenomenon (hat tip to Goodfountain). (If you get deja vu when you read the blurb, it's because the lead author, Deborah Fein, and the results were previewed in this clip.)

At issue are three critical questions:

Can a child who meets the diagnostic criteria for ASD at a young age cease to meet the diagnostic criteria at an older age? (The "If".)
What are the traits of the children who have the potential for "recovery"? (The "Who.")
To what is recovery attributable? (The "How.")

Let's see what us amateurs can glean from the published extracts.

If - Given that there are five studies validating the phenomenom, I believe the If question is answered in the affirmative. This blogger doesn't doubt that the phenomenom is real.

Who - As for the Who, this study concludes:

Children who failed to meet diagnostic criteria for ASD at follow-up were more likely to: 1) be 30 months or younger at initial evaluation; 2) have milder symptoms of autism, particularly in the social domain; and 3) have higher cognitive scores at age 2.

In other words, these children were on the mild to moderate end of the spectrum to begin with.

How - Now onto the loaded question - the "How." The How is why the MSNBC clip sent me into a tizzy. The How can likely be attributed to either services or maturation. As I have blogged, I think it's maturation, and this study validates my belief:

No differences between children with stable and unstable diagnoses were found for amount of intervention services received.

I'm not asserting that services don't help. On the contrary, I believe that services are essential for certain children. Rather, I'm suggesting that full blown "recovery" is a biological destiny that cannot be induced with services, a conclusion supported by the above excerpt.

Now let's loop back to the 2008 study and the most recent study (which is ongoing). Note that Deborah Fein, featured in the MSNBC clip, is involved in both studies. Since the most recent study is ongoing and not yet published, I will attempt to deconstruct the 2008 study, which appears to be substantially similar.

In this blogger's opinion and based only on the abstract, the 2008 study is a bit obtuse and has an editorial bias. The abstract states:

Predictors of recovery include relatively high intelligence, receptive language, verbal and motor imitation, and motor development, but not overall symptom severity.

Let's focus verbal or motor imitation, commonly referred to as "mirroring." The absence of mirroring is said to be one of the hallmarks of autism. The 2008 study shows that the presence of mirroring in a child is a predictor of losing the diagnosis. But then it goes on to say that "overall symptom severity" is not a predictor of losing the diagnosis. Really? By implication, the study is asserting that a child can have mirroring skills yet still be "severe" from a symptom severity perspective. I'm not an expert, but that doesn't make sense to me. If a child has mirroring skills, relatively high intelligence and receptive language, then that child is at most moderately impaired, relatively speaking, and to suggest otherwise seems obtuse to me.

Next the study goes on to state:

Controlled studies that report the most recovery came about after the use of behavioral techniques....Possible mechanisms of recovery include: normalizing input by forcing attention outward or enriching the environment; promoting the reinforcement value of social stimuli; preventing interfering behaviors; mass practice of weak skills; reducing stress and stabilizing arousal.

The clear implication: ABA ("applied behavior analysis") brings about recovery. I feel a tizzy coming on again. Blood pressure rising. Here is the big flaw: the study doesn't compare the ABA group to a group that didn't receive ABA. Now, you might say, well you are just reading the abstract, which is true. However, Kev from Left Brain/Right Brain reports that he reviewed the entire 28 page study, made the same observation and went so far as to email the study's authors. The authors replied to Kev on an unrelated point but did not address the issue of controlling for services. (See second to last comment from Kev.)

The new, ongoing study reports:

Most of the formerly autistic kids got long-term behavior treatment soon after diagnosis, in some cases for 30 or 40 hours weekly.

What we don't know is whether they are following children who were not receiving ABA.

With respect to the 2008 study and the ongoing study, I suspect an editorial bias in favor of services. Which I understand because I'm sure ABA does a lot of good for a lot of children. But editorial bias is not science. Unless they're comparing the beneficial effects of the ABA to a controlled sample (like the Lovaas study did), then it's all smoke and mirrors.

Switching it up.

2009-05-06T18:56:00.000-07:00

Well, Brad's insurance appeal was denied. We will press forward with a second level administrative appeal, but in the interim, we're pulling the plug on services. We're going to try to apply some of the the therapy, particularly the gross motor exercises, ourselves. The fine motor activities will probably be hit or miss.

And since we're losing OT, I've put the wheels in motion on private speech.

I asked the OT for some parting words of wisdom, and she told me something that makes this mama proud. Something I've heard from many therapists before her. She complimented Brad on his great temperament. "He always smiles, and follows directions," she said. Too true. He's a great little guy.

Next up for the one person book club...

2009-05-05T17:25:00.000-07:00

...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.

Google Critic Wants You Aspies to Appreciate His Pretty Little Designs

2009-04-28T18:19:00.000-07:00

Apparently, Google is some sort of hotbed of aspergian thought. Who knew? Google is an employer that values engineering prowess, and doesn't penalize its employees for weak social skill. That's a good thing, right?

Wrong, according to this esoteric rant:

Google was founded by extreme-male-brain nerds and, by all outward appearances, seems to hire only that type of person, not all of them male. Apart from Bowman, I can think of only two Google employees I could stand to be around for longer than an elevator ride.

See, the blogger is unhappy that Google drove its marquee designer, Bowman, to quit. He continues:

My impression of “Googlers,” which I concede is based on little direct knowledge and is prejudicial on its face, is one of undersocialized, uncultured, pampered, arrogant faux-savants who have cultivated an arrested adolescence that the Google working environment further nurtures. Their computer-programming skills, the sole skills valued by the company, camouflage the flaws of their neuroanatomy. Their brains are beautifully suited to the genteel eugenics program that is the Google hiring process but are broken for real-world use.

Ouch.

Isn't this analogous to attending Spelman College and complaining about the emphasis on African studies? I mean, really, it's Google, a company built on a search algorythm.

And for these engineers whom the blogger stereotypically dubs aspergian, Google and companies like Google likely represent an oasis in a desert of prejudice. A place where they are valued because of who they are, not in spite of it. A place where failure to comply with the rules of social order doesn't hold them back.

Here, the coin is flipped. Whereas, in the majority of society, the neurotypical blogger is in the majority, with aspergians in the minority, at Google (and companies like Google), it's the reverse. And the blogger complains: aspergians have no taste and can't entertain him longer than an elevator ride. Well, boo f ing hoo! Isn't that unfair. Welcome to high school for the average aspergian. Newsflash: life isn't fair.

So the good news is that society is moving in the right direction. There are geographic pockets and industry sectors in which aspies can thrive. Aspergians are shining, and society is valuing their contributions.

The bad news is that it appears that an ugly backlash is under way, as evidenced by the rant.

[Via Gawker]

Updated April 29, 2009

Prospective

2009-04-28T18:09:00.000-07:00

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.

Retrospective

2009-04-28T17:46:00.000-07:00

He may still toddle in the literal sense, but he's not a toddler anymore. Bradley is growing up fast! A quick post to memorialize some of his recent transitions:

Potty - I'm happy to report that Brad's potty strike was short-lived. To recap, we did what most parents do in the beginning - we prompted him a lot. So that he wouldn't forget. Well I think all the prompting made him anxious, which resulted in the potty strike. To remedy the situation, we did two things: (i) we chilled out, and (ii) we started him on double fiber sandwich bread, just two slices at lunch time. I don't know if it was the fiber or something else, but he got the hang of it, and today, he's solid. No accidents.
Big boy bed - we finally transitioned him out of the crib. We opted for a real bed (with safety rails), rather than a toddler bed since he's a tall 3+ year old. He mounts it on his own with a little stool, but he doesn't dismount on his own. So he still waits for me to get him in the morning and at nap. But the good news is that he really likes the bed, and he didn't have any difficulty with the transition.

And last, my confession:

Paci - yes, until recently, Brad was using a paci at nap and overnight. The pacis NEVER left the crib (so they're not a speech delay culprit) - they were only used as a sleep aid. We did the same with Jeremy and I credit the little sleep I was able to get when they were infants to the pacis. Anyway, I was very nervous about this one, but we ditched the pacis when we transitioned him out of the crib and...drumroll...success! It was unremarkable. I think the novelty of the new bed distracted him from the loss.

More Autism Awareness on MSNBC

2009-04-21T17:37:00.000-07:00

If you're insatiable, here's a sensory integration-themed clip:

Visit msnbc.com for Breaking News, World News, and News about the Economy

Nothing new here for SPD junkies, other than the latest advances in consumerism.

"Recovery" reaches the masses.

2009-04-19T10:06:00.000-07:00

Visit msnbc.com for Breaking News, World News, and News about the Economy

This video segment features Karen Exkorn, author of The Autism Sourcebook, and her son Jake. I read the Autism Sourcebook early on and, as I blogged, I did not find it compelling. Bluntly, I don't personally believe that "recovery" can be sourced to ABA, so I found her story misleading. Rather, I believe that the natural process of maturation, combined with a rich environment (which ABA can provide), causes certain children to cease to meet the diagnostic criteria. (But keep in mind, I'm a blogger, not an expert.) And on a personal note, I bristled at her recommendation that a 2 year old be subject to 40 hour per week of treatment.

To be clear: I'm not discounting the benefits of ABA, where the results are short of recovery. ABA is probably the best therapy for many classically autistic children, and I don't doubt for a moment that ABA is the best bet for a positive outcome for many.

Incidentally, Jake was initially diagnosed with PDD-NOS, not classic autism.

Autism Awareness Month

2009-04-15T17:17:00.000-07:00

I figured I'd buck the trend and post on awareness mid-month. Just in case you all forgot: April is Autism Awareness Month.

But awareness is a double-edged sword, isn't it? After all, a little knowledge can be dangerous. (Cue the video of Jenny McCarthy on Larry King during Autism Awareness Month 2008.) People by and large are familiar with the face of autism in its severe form and the ubiquitous prevalence data. And so - and perhaps I'm being pessimistic - the popular conception of autism is: scary and prevalent, and maybe related to vaccines. Superficial awareness - I'm not a fan.

And that's why I'm blogging to support not the promotion of superficial awareness but rather the promotion of a real, multi-dimensional understanding. For me, as a parent, I've come to understand autism through the stories of real life parents and of autistic persons alike. The nature of the disorder - the good and the bad - comes to life and takes shape through these stories.

And on that note, I'm recommending Autism the Musical, a video that served to promote my understanding back in April of 2008, when I was three months into my journey. It represents a pretty good cross section of the autistic spectrum, from classically autistic to PDD-NOS to asperger's. One of the cast members, Lexi, stole my heart, and to this day, the memory of her beautiful voice warms my heart. This blogger's advice: buy the video and steer clear of CNN. My two cents.

Recalibrated Expectations

2009-04-08T17:33:00.000-07:00

It's human nature to have hopes and dreams for your child. I love Brad unconditionally, but I can't turn off that part of my brain that hits the fast forward button and imagines the future.

And like so many parents, Brad's diagnosis initally shattered those dreams. Then I learned about autism, recalibrated my expectations and came up a with a new vision for Brad's future. He would be different, in a good way.

The rosy outlook culminated when Brad was evaluated by his school. His teacher made an observation in his written report: "superior attention and eye contact during the 50 minute evaluation." When we met in person, he went on to tell us that Brad isn't what he expects for the PDD diagnosis.

Superior, I thought. Not "good", not "sufficient", but "superior". There it was, in black and white. He's going to be okay in school. He might not even need special education for long. My expectations crept up.

Flashforward to Wednesday of this week. I met with the school district to check in and see how Brad's doing now. The verdict: not well. There's a massive delta between his one on one performance (i.e., when he was evaluated) and his performance in a group setting.

Bam! Serves me right for having high expectations and getting ahead of myself.

He's withdrawn. Socially, he's an island, off on his own. Cognitively, he's having difficulty following instructions. He goes for the playdoh by himself when the other kids are monkeying around with each other. He doesn't attend, which is his shining strength in a one on one setting. Bottom line: he's barely keeping up. And keep in mind, this is a special ed class. His peers are, for the most part, not socially advanced.

I've blogged before that Brad doesn't melt down. And from this I've concluded that he doesn't overstimulate. I think I'm wrong on that point. I suspect that he does overstimulate, only instead of melting down or expressing upset, he withdraws and blocks the world out.

I pressed for one on one "pull outs" for OT to fill the soon-to-be void, assuming we have to stop private OT. As I predicted, the school shut me down. Something about the law requiring services "in the least restrictive environment." They're going to add Brad to the OT's informal rounds. This means she'll visit him in the classroom and facilitate in a group setting. Not what I wished for but it is something.

The physical therapist will do something similar, visiting Brad when he's on the playground with the group to facilitate his physical play. He'll also get ad hoc one on one as needed during regular class to help him keep up. His IEP is being revised to reflect these new accomodations.

So, once again, I am recalibrating expectations, hopefully to something realistic this time. As for Brad, I'm grateful that he has a great educational team that really understands and appreciates him. Onward, with realistic expectations and a realistic IEP.

Quotable

2009-04-08T17:08:00.000-07:00

"Q: What's the difference between an extroverted actuary and an introverted actuary?

A: The extroverted actuary is going to look at your shoes and their shoes when they're talking to you."

January 19, 2009, Tonya Manning, Chief Actuary of Aon, poking fun at the members of her profession

A Little Bit Autistic Against the Machine

2009-04-02T17:28:00.000-07:00

The insurance machine, that is. After covering occupational therapy for about 10 months, our insurance carrier has denied future services because our insurance covers OT for rehabilitative, short-term purposes only. OT for developmental maladies is regarded as habilitative - gaining new skills - rather than rehabilitative or regaining old skills. So I've lodged an appeal, complete with six enumerated exhibits. (I'm completely serious.) One such exhibit is cutie photos of Brad ostensibly to demonstrate that he had no signs of hypotonia as an infant (whereas he does have hypotonia now, and therefore OT would be rehabilitative). But the real purpose of the pics is to make an emotional appeal. Claims reviewers do have emotions, don't they???

Also, we've put the wheels in motion to try to get one on one OT through the school system. Right now he gets OT in a group setting, which is great but one on one, and the monitoring that goes with that would be better. The road block with the school system is different, but equally impenetrable - I need to make the case that his DCD or whatever impairs his ability to functionally access the classroom. Bottom line: the children who get one on one OT are bumping into stuff or toe walking, and Brad doesn't do either of those things. So this is probably a long shot.

We'll hear back on both fronts in the next month...

Quotable

2009-03-31T04:11:00.000-07:00

"The geeks shall inherit the earth."

Steve Wozniak, always ahead of his time.
March 30, 2009 on Dancing with the Stars

"Aversives"

2009-03-28T12:44:00.000-07:00

Since autism has touched my life, I've had a keen interest the subject matter, including autism in the news. (Can you tell?) And so, living in Massachusetts, I'm aware that a local special needs school is on the worst offender list for its use of "aversive therapies", including electric shock therapy. Outraged that this was happening so close to home, I've taken to quiet advocacy, emailing my local representatives to crack down on the abuse.

A moving essay just published in Salon.com provocatively entitled "The Monster Inside My Son" reminds me that there are two sides to every story. Read this essay at your own peril.

Not that DSM-IV doesn't have me sufficiently confused....

2009-03-26T17:48:00.000-07:00

...check out DSM-V. Well it doesn't exist yet. But here is a preview of issues that the authors will consider when revising DSM-IV. One that caught my eye is "Is Autism a Life-Long Diagnosis?" - a theme I have not only explored on this blog, but lived. Vicariously. Also interesting: the discussion of asperger's versus high functioning autism ("HFA"). What differentiates the two according to DSM-IV criteria is the presence of significant speech delay. But there is some debate as to whether the two conditions are etiologically distinct:

Asperger’s Disorder – is it Autism? In her introduction, Francesca G. Happé, Ph.D., (London, UK) raised some of the key questions that have arisen regarding the diagnosis of Asperger’s Disorder, which was introduced into DSM-IV in 1994. These questions include: is there an ‘Asperger’ subgroup of autism with distinct cause, course, cognitive profile, and intervention needs, and if so, what is its relation to other ASDs?...Asperger’s disorder has...had an impact on family studies of autism with regard to what we recognize as “caseness.” Dr. Happe noted that the current criteria do not work: they do not allow for developmental change, the early language criteria do not demarcate groups with different prognoses, it is hard to apply the diagnosis for adult cases, and there is no clear conceptual basis for the diagnosis. Dr. Happe concluded that although there is a recognizable Asperger’s type and that some cases of classic autism grow into this picture, she wonders whether there may be a better classification schema. Sally Ozonoff, Ph.D., (Sacramento, CA), in her presentation, compared high functioning autism (HFA) with Asperger’s, and noted that there were few differences in their definitional DSM-IV criteria; both require two social symptoms and one repetitive/stereotyped symptom, both are in the average range intellectually and have current fluent language. The main criterion distinguishing the two disorders is the requirement in Asperger’s that onset of language occurs at the expected time, e.g., single words by age 2. Dr. Ozonoff noted that it is difficult to evaluate the literature since definitions vary across studies and that many children who are thought clinically to have Asperger’s actually meet criteria for autism (which supercedes a diagnosis of Asperger's). There is some evidence to suggest that Asperger's and HFA do not represent distinct disorders: they co-occur in the same families and do not “breed true” (i.e., family members of patients with Asperger's have HFA and family members of patients with HFA have Asperger's); children with autism who develop language have similar outcome to Asperger's; HFA and Asperger's are indistinguishable by school-age; and although studies find better language skills and/or verbal IQ in Asperger's, multiple studies have found no group differences in other neuropsychological domains.

Basically, we're in the abyss. I mean, I used to think, oh that CAN'T be a possibility for Brad. Silly me, looking for bright lines. I'll never learn! I have since downgraded "CAN'T" to "maybe not", bordering on "possibly some day in the distant future."

I figured this is worth a mention since a number of my bloggy friends are exploring asperger's.

TGIF

2009-03-19T19:31:00.001-07:00

Meet Brad's some time babysitter, which I referred to here.

His name is "VTECH."

Quirking Out

2009-03-15T11:45:00.000-07:00

As I blogged, Brad started to "stim" as he approached his third birthday. That trajectory has continued. Lots of spinning and flapping, and lately he puts his finger on his nose when he talks - probably not a stim but quirky nonetheless. In any event, I regard stimming as a trait, not a symptom. I'm taking notice of it for the sake of taking notice of it, not to complain.

Also, he's memorized a lot of math. See, his grandmother gave him a kiddie laptop for Chanukah. Both of the boys received the same gift (although Jeremy's is slightly more advanced), but Brad has become attached to his while Jeremy's is collecting dust. No exagerration, he's memorized how to add or subtract any two numbers under 20. He can identify numbers up to 200. And it doesn't end when he puts down the laptop; he likes to recite it.

Anyway, a certain lightbulb has gone on. In the early days, I noted that some autism moms were defensive about their children - prompted by those looks from strangers. I didn't understand this last year, but I get that now. I've even received a few remarks from friends that have rubbed me the wrong way. Since I'm not anonymous, I won't elaborate. But suffice it to say, that lightbulb has gone on for me now.

Alas, a question for my sage readers: is there a tactful way to tell some one to STFU???

"A Little Bit Autistic"

2009-03-15T11:12:00.000-07:00

Just a quick note to reflect on recent events. After going through denial and acceptance and all of the turmoil that came with that, and after having Brad evaluated and diagnosed with PDD not once but two times, the latest doctor opinion casts doubt on the PDD dx. In the immediate aftermath, I felt angry. Now, my feelings are somewhat indifferent.

When it comes to mixed messages, it looks like Brad may be in good company. In comments, Three Channels and Goodfountain report similar mixed messages, i.e. between doctor 1 and doctor 2, or between doctors and the schools. And Stimey blogs about early skepticism on behalf of one doctor before getting a dx for Jack. So, in some respects, I'm just following a path that so many before me have paved, online and offline. A path that I'm certain will have many twists and turns.

My long time blog readers may recall that when I started blogging, I called my blog "PDD-SOS." It was really more of a personal vent than it was a blog, but no matter. I retired that name when acceptance starting setting in. If there's any doubt in anyone's mind: this time, the name is staying. Wherever the journey leads from a diagnostics perspective, my sense is that we will be A Little Bit Autistic for quite some time to come.

Mind/Body Connection

2009-03-12T17:12:00.000-07:00

There's a school of thought that what Brad has is, and should be treated as, primarily a language disorder. I haven't blogged much, if at all, about speech therapy and communication issues. The reason: I regard Brad's speech delay as a symptom of something else. Of course I've blogged about that "other thing," whatever it is, ad nauseum.

But some one could probably present a similar case for the motor symptoms. That is, one might similarly argue that the motor impairments and hypotonia are just a symptom of something else, so why focus on those discrete symptoms?

Two thoughts on this:

1) I don't regard DCD as an isolated motor deficit. While the DSM-IV description of DCD points in that direction, in common parlance the alternate term "dyspraxia" is understood to engender a whole host of traits from speech delay to social impairment to disorganization of thought. And as I blogged, DCD is a set which overlaps with autistic spectrum disorders.

2) I've observed many therapy sessions, including speech, occupational therapy, developmental therapy and floortime. Hands down, without question, the most effective sessions by far have been the occupational therapy sessions. The occupational therapist, not the speech therapist, gets the most spontaneous speech from him. While I don't have proof of its effectiveness in a clinical sense, this mama believes that occupational therapy implicates some kind of mind/body connection.

Because the occupational therapy (OT) visits were so successful, the developmental therapist(DT) did a co-visit so that she could observe the OT's technique, and carry it over in her own sessions. And lo and behold it made all of the difference. For example, at first the developmental therapist would sit on the floor with Brad and play with him, and try to get him out of rigid routines, and to use imagination, etc. It just didn't work. I mean they played, but Brad mostly phoned it in, and veered into his comfort zone, i.e. blocks. After the co-visit, she started interjecting movement breaks into the play. It was simple: she put the wooden puzzle pieces on one side of the room and the puzzle on another. Voila! Such a small thing made such a big difference.

Brad's occupational therapist explained that it's tied to his arousal level. As I blogged, Brad presents as a sensory disregarder - "ho hum", difficult to stimulate and unmotivated to move. If Brad were a car, his idle would be on low. Seriously, by my count, he's had less than five full blown tantrums in his entire life and he's never had what can be described as a "meltdown." As I've blogged before, he has never once stood up in his crib, without prompting and assistance.

Brad's occupational therapist showed me that getting him to move increases his arousal level. And, in turn, when his arousal level is higher, so too is his level of engagement and spontaneous speech. So to make a long story long, this is why I don't blog about speech therapy. I regard the speech as intrinsically tied to sensory processing and arousal. To blog about communication without the other stuff doesn't make sense. To me, anyway.

Ever wonder why autism diagnosis shows a positive correlation to rainfall? I have a theory: these kids aren't outside much and therefore aren't moving enough. Moving the body forces the left and right hemispheres of the brain to talk to each other, which, in turn, promotes healthy neurological development in all respects. Just sayin. It's possible.

What's the deal with that?

2009-03-06T06:13:00.000-08:00

Why do I open my mouth when I apply mascara or eye makeup?

I ask because I think it's some sort of reflex. (Name of reflex? Anyone???) Brad has a similar reflex, but obviously not in a mascara context. When Brad attempts to cut paper with scissors (with his left hand), he splays the fingers of his right hand and opens his mouth. This happens every time, without fail, and he looks tense. His OT says he's overloaded or challenged or something. Maybe it has something to do with concentration?

Just wondering. Has anyone else noticed this with their child, typical or atypical?

One more comment on a comment.

2009-03-01T06:21:00.000-08:00

I'm not all piss and vinegar here, and "losing the diagnosis" should be put into perspective. He's lost one dx (PDD-NOS), but he kept the other (DCD). As I blogged, I regard PDD-NOS and DCD as overlapping sets with blurry lines. Brad is just moving to a label that connotes a different type of difference. But I think DCD is a better label because Brad's social impairment can no longer be described as "severe", and the label itself may be setting us back at this point. Here in Massachusetts, an "autism" diagnosis is the kiss of death from an insurance perspective. We're losing OT coverage in a week. I'm going to try to appeal. Perhaps, DCD will help.

In the DCD continuum vein, Anything, Sweetie remarks:

i have recently come to think of the spectrum as a colour wheel, and a term like DCD to be about as helpful as the word "blue-ish".

Point well taken, but I like the word "blue-ish." So many children with autism and sensory processing disorder are hypersensitive, or a combination of hyper- and hypo-sensitive. On the metaphorical color wheel, maybe they're red for hypersenstive, or purple for hyper- and hypo-sensitive. I think Brad is exclusively hyposentive. Like the color blue, he's cool with his sensory intake and expression. I finally feel like we have a label that fits nicely. I have a good framework to understand him, and perhaps some direction to treat him. Sure there are lots of shades of blue, but we can at least say that blue isn't the same as yellow, can we not?

The takeaway.

2009-03-01T05:55:00.000-08:00

In comments, LT Mommy and Goodfountain make a compelling case against early diagnosis. These comments have merit, and I could probably be a poster child for the shortcomings of early detection.

My takeaway is different: at 24 months, I believe Brad met the DSM-IV criteria for PDD. During that first evaluation, I recall that, while I was talking to the doctor, Brad flipped over his wooden puzzle, dumped out all of the pieces, and started lining them up on the floor. That stage, when he persevated a lot, only lasted a few months. He didn't respond to name well back then, and he was mostly nonverbal. (When he started speaking, he persevated less.) So I don't fault that doctor for the diagnosis.

I fault her for her prescription for treatment. Effectively, she lumps the autistic spectrum - an extremely heterogenous group - into a homogenous box. If a doctor is going to apply the label liberally, then it's incumbent on the doctor to provide a more nuanced prescription for treatment. And not scare parents into signing up for services that their children don't need. 25 hours per week??? That's a lot of work. If a child doesn't need that, it's irresponsible to make the recommendation.

As I stated above, early detection had its shortcomings in our case. But I know - I'm certain - that there is a poster child for early detection out there. If your child is on the trajectory for classic autism, knowledge is power and time is of the essence. In this blogger's opinion, a parent should not dodge doctors or put off evaluation. The stakes are too high. And no one can force services on your child. The bunker mentality is just as bad, if not worse, than autism hysteria. In this blogger's opinion, there's got to be a better way.

Vent.

2009-03-01T05:35:00.000-08:00

Thanks for your comments. (And for indulging my vent.) I realize I have to keep going with the vent. To wit:

In the post and in comments below, I complained that the doctor who first diagnosed Brad wasn't helpful. She examined him in an hour. She produced a form letter at the end, the entirety of which reads as follows, verbatim but redacted:

To whom it may concern:

Bradley X (DOB 01/22/2006) is followed in PAC clinic at HOSPITAL. He has been diagnosed with PDD-NOS. Please refer him for Autism Specialty Services though the Department of Public Health. As is recommended by the National Research Council (2007) and the American Academy of Pediatrics (2007), he requires a minimum of 25 hours a week of individualized instruction to address the core deficits of autism, social communication, and play. I recommend instruction based in ABA, Floortime, or a combination.

I asked her to prognosticate in the general sense, or to reassure me that he would be verbal, since he had good gestural communication. She demurred. She said something like: "sometimes I privately predict a child is mildly affected and it turns out to be more severe, and vice versa, and therefore I don't make predictions." She then drew a line, with typical at one end and classically autistic at the other end. She put a point near the typical end, and said that with services, she was hopeful he would migrate over to typical. This is exactly how that exam went down.

So I left with the impression that without Floortime or ABA, there was a chance he might not acquire speech.

There were a number of red flags here, which I picked up on at the time and which provided a basis for my skepticism:

1) There was no wait for this appointment.

2) It lasted for just an hour.

3) The dx and prescription for treatment were produced and printed in a matter of seconds.

4) She qualified her dx by saying: "I might be wrong."

5) She didn't administer CARS or ADOS.

Back to the issue of acquisition of speech: I did what any parent would do under the circumstances - I opinion shopped. I asked Brad's SLP if she thought Brad would acquire speech. She looked at me like I had two heads. "Will he?" she asked. "He is acquiring speech. Now." She didn't hesitate to say with certainty that Brad would be a verbal child. Now why couldn't the Developmental Pediatrician, an MD, do the same? Another red flag.

Although I was skeptical, I felt the need to do the diligence. I met with an ABA provider, and gave the therapy serious consideration. I decided against it for a number of reasons but it wasn't an easy decision. After finding a provider that would administer Floortime, I signed Brad up for 6 hours per week of that therapy.

When I returned for a routine follow up 3 months later, Brad was significantly more verbal. Ironically, I had fantasies of the doctor undiagnosing him then and there. I couldn't have been more wrong: she barely observed him, and was intent on getting me to increase his number of hours of services. Quantity, not quality, was her focus.

"PDD-NOS not medically descriptive"

2009-02-28T06:24:00.001-08:00

Welcome to my world. A world in which, the more I seek clarity, the more it alludes me. Case and point: in August, when I sought a second opinion for Brad's PDD-NOS diagnosis, the doctor told me she didn't think it was PDD, and then went on to tell me it was PDD. (He met the cutoff when the ADOS test was administered.)

Yesterday, I brought Brad back to that same developmental pediatrician for routine follow up. In the waiting room, I was given a one page intake form in which it asked for a brief update, and left a blank for "concerns." I wrote one simple note: "PDD-NOS s/b DCD?"

Well long story short, the doctor agrees. But rather than write, he no longer meets the criteria for PDD, she writes: "Hypotonia; DCD" and she continues: "PDD-NOS not medically descriptive."

So I think Brad has officially lost the PDD diagnosis.

Oh and we get another label. *eyes roll* "Communication disorder" which in theory connotes expressive/receptive language delay PLUS nonverbal/social deficit. I thought I had heard it all, but I had never heard of that one. She calls it the notch down from PDD-NOS. Great, another label. Yes, I googled it, but it isn't worth sharing.

I'm providing an objective account here, but yesterday was a moving day for me, emotionally. It brought back a lot of memories, some of them unpleasant. A lot of what I'm feeling is anger towards the first doctor who diagnosed Brad and suggested he needed 25 hours per week of ABA. She came up with that little nugget after observing him for an hour. I can say with 100% certainty at this juncture, that was a totally inappropriate prescription for treatment.

Anyway, I'm going to stew on this for a while. The journey isn't over for Brad but I think it may be a different kind of journey.

What is intelligence?

2009-02-19T17:45:00.000-08:00

It depends who you ask. The "intelligence quotient" test itself has been the subject of much debate because it favors those with stronger language abilities.

In this blogger's opinion, procesing speed is one of many factors that determine one's intelligence. Other factors include analytical intelligence and emotional intelligence.

Women, in general, are faster at processing, and consequently have superior social abilities. But it's not fair to say, as a general matter, that women are smarter than men for that reason, just as it's not fair to say men are smarter than women because in general, there may be a general advantage in analytical thinking.

Brad has a slow and coarse processor, which probably accounts for his language delays, his hypotonia, his lack of coordination and his social impairment. Many children with DCD/dyspraxia share these qualities.

However, I don't think Brad is lacking in intelligence overall. Brad's school district noted he was above his age in "cognitive ability", e.g. shape, number, letter and color identification, which is common for high functioning autism. While the typical developing child has pretend tea parties and the like, the atypical child is developing spacial and visual sense, and other pursuits.

The takeaway here? I blogged below the impairments that DCD causes. But it's not necessarily all bad news...

Musings, Part II: Social Exchanges

2009-02-19T17:34:00.000-08:00

Have you ever considered all that was involved in a simple social exchange? I didn't, until ASD became part of my family life.

"There's a lot of data in a face," one of Brad's therapists told me several months ago.

Data? Face? It seemed like an odd statement at the time because, as a typical person, I read faces intuitively, sometimes successfully, sometimes not.

Having a son with ASD forced me to consider the process of social intuition. Take, for example, happiness. How can I tell if some one else is happy? First, words help. If some says, "I'm happy," that's a clear indication of happiness. Second, laughter would be an indication. But what if there are no literal expressions of happiness or laughter. How can I tell? A smile. Eyes light up. It's easy to intuit, but hard to articulate the process.

What about less subtle emotions, such as apprehension. Eyes may widen. Mouth may open. Body may become stiff. There is a lot of data there.

Now consider when some one is talking to you: eyes widen, eyes narrow, mouth opens, body tenses, head turns, words are uttered, posture changes. Data, data, data, and more data.

Now consider a social exhange: you're on the receiving end of all of this data, and in a split second you have to perceive it (i.e. hear the words, see the face), process it (what do the words mean when combined with the gestural communication and the facial expressions) and give it back (i.e. with words or nongestural communication).

Now consider Brad's perceptual abilities: face in the background, appealing visual/spatial stimulus (e.g. letters) in the foreground. And consider Brad's processing abilities: slow and coarse. So when he's in a social encounter, he's bombarded with data which he can't process efficiently, and often that data will be in his background, so he'll disregard it the way we disregard background noise. Other times, he may process it, but very slowly.

Still, he manages to process some of it, and that's an accomplishment in and of itself; he does manage basic reciprocal social exchanges. I'll smile at him and say "Brad!" He'll smile at me and say "Mommy!" Mind you, he didn't start doing this type of exchange until recently, but that small exchange makes me so very hopeful.

Musings, Part I: Foreground/Background

2009-02-19T17:06:00.000-08:00

We know that the perceptual abilities of those with autistic spectrum disorders is different. For example, as I blogged, one study showed that those with ASD tend to have eagle eye vision. Individuals with ASD report other differences, including differences in the ability to perceive sight, sound, touch and taste.

I have no idea exactly how Brad takes in the world. However, I do have a theory: his foreground/background are the reverse of typical. Not the exact reverse. But different. For example, I often sleep in an oversized shirt emblazoned with a large "Old Navy" logo. When I wake my typical son, he greets me - sometimes with a smile, sometimes with a frown, but I believe he sees me in the foreground, and my shirt in the background.

With Brad, I think it's the reverse - it's like he sees my shirt in the foreground, and me in the background. Drawn to the visual stimulus, he recites the letters. He may be interested in affirmation for getting the letters correct, which is great, because that's joint attention. He's not detached from me. He just doesn't take me in or experience me the way my typical son does.
Similarly, noises that are in my background, like a plane flying overhead, appear to be in Brad's foreground. And when we go to a restaurant, he has an uncanny ability to pick out a baby crying, even if it's just a dull wimper from across the room.

Intro to Two Part-er

2009-02-19T17:00:00.000-08:00

More musing about lofty subject matter: Brad's brain. His processor.

Perception.

Processing.

Expression.

Cognition.

What's going on in there? How does Brad take in the world and how does he synthesize it?

Here, I theorize from a parenting, not scientific, perspective.