About this blog.

My son was diagnosed with PDD-NOS at 24 months. I created this blog to bring meaning to the often-confusing label. Sometimes I have answers. Other times, just more questions.

Wednesday, December 30, 2009

Actual Story

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.

Tuesday, December 29, 2009

Imagined Story

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.

Monday, December 28, 2009

Corduroy learns a quadratic equation? A mom can hope.

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

* * *

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

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

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

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

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

Friday, December 25, 2009

Pass the eggnog.

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

Friday, December 18, 2009

DSM- V Epilogue

This week, we learned arrogance has a price.

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

The secretiveness of the DSM‐V process is extremely puzzling. In my entire experience working on DSM‐III, DSM‐IIIR, and DSM‐IV, nothing ever came up that even remotely had to be hidden from anyone. There is everything to gain and absolutely nothing to lose from having a totally open process. Obviously, it is much better to discover problems before publication ‐and this can only be done with rigorous scrutiny and the welcoming of all possible criticisms.
Apparently, DSM-V Task Force knows it all because, by all outward indications, they prefer a closed process. When the self-appointed stewards of psychiatric diagnosis speak, the rest of the psychiatric community must bow to their wisdom.

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

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

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

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

Thursday, December 10, 2009

One is Silver and the Other Gold

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).

Saturday, December 5, 2009

Wednesday, December 2, 2009

Label Junkies: University Edition

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

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

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

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

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

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

It appears that, in a policy shift, Princeton's Office of Disabilities gaveth and then tooketh away:
Metcalf-Leggette learned of her diagnoses in 2003. Later, at the private school she attended, she received a 100 percent time extension for exams; a 100 percent extension on the SAT; and a 200 percent extension on the ACT.

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

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

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

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

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

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

I will close with some choice comments on the lawsuit, via the Blackbook Legal Blog. First, an impassioned defense of accomodation:
Do some folks take advantage of the system? Sure. But the system is there to help those who really have a serious need and just require a bit of leveling the playing field to demonstrate they have the same knowledge as their non-disabled counterparts. If not for accommodations and technology I would still be a college fail out, instead of having 3 degrees with honors.

All I ask is a fair chance to show that despite my disabilities, I still know the law, and I can still practice the law. I know my limitations, I know my weaknesses, and I am not asking for anyone to feel sorry for me or give me an advantage over anyone else. All I ask for is the use of the technology I need and the time to use it, then let me rise or fall on my own. My grades, the vast majority of which were earned un-accommodated and my getting to within 11 points of passing the bar exam in half the given time show I know the law, I just need a bit of extra time to show I can write the law in a readable manner.
And one commenter makes light of the label junkie-ness:
I was always a bit suspicious of these claims (I must admit that when I read the list of conditions the plaintiff was claiming it seemed like something from the Onion, I was expected to see "intelligence deficit disorder"). Even assuming they are 100% legitimate, I thought a fair compromise would be to allow the student to take the tests untimed but to make clear that these students could not receive a class rank without taking the tests under the same conditions as everyone else.
I ressemble that remark.

Friday, November 27, 2009

Still recovering...

...from a triptophan hangover...

Gobble, gobble. Best wishes to you and yours.

Tuesday, November 17, 2009

Life is a Highway: Part I

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.

Monday, November 16, 2009

Life is a Highway: Part II


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.

Thursday, November 12, 2009

Syllogism-ism: Part I

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

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.

Friday, November 6, 2009

"Pruning"


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

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

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

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

Friday, October 30, 2009

We vax.

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

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

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

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

Be safe, everyone.

Added: An Epidemic of Fear [via Wired]

Sunday, October 25, 2009

A beautiful memory.

And now for something completely different.


Free live streaming by Ustream

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

Enjoy.

Thursday, October 22, 2009

The best things in life are free.

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.

Friday, October 16, 2009

Prevalence of Prevalence Statistics

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

What struck me as I was reading it was this little gem:
A central goal of the SPD Foundation is to ensure that the disorder [sensory processing disorder], now estimated to affect as many as 1 in 20 children, is included in the DSM-V, which would turn it into an official diagnosis that would come with much-needed help.
Irony alert! An editorial that criticizes the establishment for distorting autism prevalence, suggests that the SPD net may be cast at 1 in 20.

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

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

Friday, October 9, 2009

Geek + Geek = ?

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

According to a recent study, autism does not appear to correlate to geeks procreating with other geeks, as previously hypothesized by Wired Magazine:
One provocative hypothesis that might account for the rise of spectrum disorders in technically adept communities like Silicon Valley, some geneticists speculate, is an increase in assortative mating. Superficially, assortative mating is the blond gentleman who prefers blondes; the hyperverbal intellectual who meets her soul mate in the therapist's waiting room. There are additional pressures and incentives for autistic people to find companionship - if they wish to do so - with someone who is also on the spectrum. Grandin writes, "Marriages work out best when two people with autism marry or when a person marries a handicapped or eccentric spouse.... They are attracted because their intellects work on a similar wavelength."
But hold the phone. The same study indicates that mothers in "highly technical" fields were 2.5 more likely to have geek spawn...er.... a child on the spectrum.

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

TGIF.

[Via Left Brain/Right Brain]

Thursday, October 1, 2009

Just Asking, Part I

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

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

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

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

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

Wednesday, September 30, 2009

Just Asking, Part II

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

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

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

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

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

Tuesday, September 29, 2009

Asked and Answered

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

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

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

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

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

Friday, September 25, 2009

Phoning it in: Google Edition

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"

Friday, September 18, 2009

Back To School

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.

Friday, September 11, 2009

Brad-Ism

"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.

Friday, September 4, 2009

Phoning It In: Back to School Edition

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?

Friday, August 28, 2009

Insurance Update

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.

Friday, August 21, 2009

Guest Blog By DH

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.

Friday, August 14, 2009

Phoning it in.

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

Friday, August 7, 2009

Go sox!

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?

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.

Thursday, July 30, 2009

The DSM-V Saga Continues

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:

  1. 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.

  2. 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.


Related: Bitterness, Compulsive Shopping and Internet Addiction [via Slate]
Secrecy and Made Up Illness: The Latest Fight Over Psychiatric Illness [Via Doublex]

Thursday, July 23, 2009

Brad in motion.

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...

Wednesday, July 15, 2009

"Excuse me, Mommy."

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

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.

Tuesday, July 7, 2009

Potent Potables for $800

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

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

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

(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.

Tuesday, June 30, 2009

Another Esoteric Post About DSM-V

Remember those proposed revisions to the DSM?

Hold the phone. Apparently, a shitstorm is brewing.

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

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

* * *

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

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


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

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

To learn more, read DSM V Badly Off Track.

Source: Michelle Dawson's Twitter account

Sunday, June 28, 2009

Not quite robust, but definitely not barren...

...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.

Tuesday, June 23, 2009

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

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.

Friday, June 19, 2009

Quick Hit

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).

Wednesday, June 17, 2009

Comment Trolling on ParentDish, Part II

What are commenters saying about the recovery study?

Not much. It only drew five comments total, versus 145 for the ADHD post. The gem: an autism quack treatment I had never heard of before:
Just wanted to let the folks with Autism in thier families to know about our therapy. We have been testing with our Salt Boxes and getting very positive results. The children are sleeping through the night and moods are improved throughout the next day.To learn more about Salt Box Therapy please visit us @www.saltboxtherapy.com

Like a moth to the flame.

Comment Trolling on ParentDish, Part I

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

Wednesday, June 10, 2009

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

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

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.

Tuesday, June 9, 2009

Sensory Processing Disorder: Ho-hum Revisited

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.

Friday, June 5, 2009

ASD Labeling: The Next Generation

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:
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]

Update here.

Thursday, June 4, 2009

Update: Recovery

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.

Wednesday, May 27, 2009

Potent Potables for $400

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.

Tuesday, May 26, 2009

The Mislabeled Child: On Autism Spectrum Disorders (ASD)

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

I Background

As I blogged, the authors write through a "neurolearning" lens. Of labeling, they write:
Labels matter becasue they can cause us to take an overly sterile, detached, and clinical view of a child's learning challenges and forget that these challenges occur in the context of a child's unique and complex life. They can make us overlook the important role that a child's unique temperament plays in dealing with learning challenges, and our need to help children develop character traits like optimism and resilience. [Emphasis added.]
The problem is: science is sterile and detached, by definition. And arguably, those very qualities are what provide a diagnosis with integrity and rid it of bias. Education and learning are, at best, social sciences and at worst, entirely unscientific. Autism, by contrast, is a biological condition - a life science, not a social science.

II Mislabeled

Applying the neurolearning lens, the authors conclude that autism is a commonly misapplied label. These mislabeled children, they argue, often have other conditions that are superficially similar to autism. They write:
...[c]hildren with these other conditions don't show the severe deficits in emotional empathy, "mirroring," and social affiliation (or sense of bonding with others) characteristic of autistic disorders.
They also report that children with autism present with different brain scans when compared to children with "other conditions." From a learning perspective, the group the authors label as autistic are generally impaired with respect to higher order thinking.

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

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

III The Good

What works best about the neurolearning paradigm is the prescription for treatment and particularly, how to teach or apply learning strategies to autistic children. This is a pet issue of mine, right? I started blogging in part because Brad's doctor was pushing ABA and I've faithfully blogged against ABA-pushing ever since. The Mislabeled Child articulates a great, easy-to-understand prescription for treatment for autistic children and nonautistic children alike. What follows is an outline of the relevant section on autism:
General Principles for Helping Children with Autistic Disorders
  • Reward and Motivation
  • Using Their Best Learning Strengths and Styles
  • Simplifying Information Input and Pattern Processing
Helping Children with Autistic Social Impairments
  • Helping Autistic Children to Develop Empathy
  • Helping Autistic Children Improve Their Social Interactions
Helping Children with Autistic Communication Impairments
  • Improving Verbal Comprehension
  • Improving Nonverbal Comprehension
  • Improving Verbal Expression
  • Improving Nonverbal Expression
Helping Autistic Children with Attention and Self-Regulation
  • Helping Autistic Children Improve Attention
  • Helping Autistic Children Improve Emotional Self-Regulation
Their roadmap for treatment is helpful, and I would encourage you to buy the book if you are interested in learning more.

The authors don't directly prescribe ABA as a treatment, but rather intimate that some of the underlying principles (reward and motivation) have merit. They write:
...[a]utistic children typically have a diminished desire to imitate others or to please and earn praise from others. In this way, they differ from most children, who quite naturally want to imitate and please parents and other adult authority figures - like teachers. Usually we take these desires to imitate and please others for granted in designing our educational and therapeutic systems. However, when a child has little intrinsic motivation to imitate or please, we must find a way to motivate her using things she finds extrinsically rewarding. [Emphasis added.]
The authors don't go on to draw the negative implication, so I will: if a child has the desire to imitate or please, it doesn't make sense to use an intensive program of therapy like ABA which is based on a system of extrinsic rewards. Common sense, right?

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

IV The Shortcoming

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

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