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.
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.