Developmental Milestone

Drumroll please.

The results of Brad's most recent annual speech eval are in, and he's testing in the average range or better for receptive, expressive, simple narratives, complex narratives, pragmatics - everything!  Yay!  It took him until age 6.5 to get there, but he's there.

Previous posts on prior speech evals here, here, and here.  

It's been a long journey.  It's not over yet, but this is me, smelling the roses.  

1 in 88: On Diagnosis "Creep"

The New Autism Reality, by Ann Bauer:

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

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

Reevaluation

Every three years, the public school system is required to assess Brad, so long as he has an IEP. He was first assessed at three years old when he transitioned from Early Intervention into the public school system. So here we are, three years later and so it is that time again. Bradley is now age 6 and has been placed in regular Kindergarten class with an aide.

According to the school, he is in the average range (47%) for IQ (or Full Scale IQ, whatever that is), the 9th percentile for processing speed, third grade level for reading, seventh grade level for spelling and second grade level for math. The assessment also noted problems with coordination and social pragmatics.

That's kind of it in a nutshell. He's a very uneven kiddo; that's what the metrics show and that's really how he presents. Uneven. I felt a tremendous amount of validation reading his evaluation because I've always suspected his slow processing speed was something that separated him from both his typical and atypical peers. And it is. He's not unintelligent. On the contrary. It just takes him longer to process things.

He qualifies for speech (pull out), occupational therapy (in class), adaptive physical education (pull out), social group and placement in a class with an aide.

This post isn't laced with the emotion of earlier posts, but there's a good reason for that. I'm no longer on that emotional rollercoaster. I have challenges ahead to be sure. But I've learned to take things as they come now.

What happens in Fight Club...

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

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

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

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

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

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

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

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

But then...

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

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

One Person Book Club Revived

Once upon a time, I was new to the world of autism. I was very calm and deliberate back then. (Not.) Anyway, I charted my reading adventures under the tag One Person Book Club.

Here, I will list some of the other books I have read, but don't particularly recommend, along with a relatively new title I recommend highly.

First, the books I've kicked over the past few years that I can't recommend without qualification:

Quirky Kids - A decent basic reference for parents, but for me, normatively, it was too focused on remediation.

Smart Moves, The Dominance Factor, Brain Gym - These are OT-themed books. The skeptic in me can't recommend them without qualification - not evidence based enough. ("It worked for Johnny! That's all we know.") But they are interesting, and if lateralization and the mind/body connection are areas of interest for you, you might enjoy these books.

And now for a book just published in May of this year that's a must-read for parents, particularly if your child is hyperlexic: Autism and Talent. Where so much of the research and so many of the parent resources are focused on deficits and remediation, this book focuses on talent, and in doing so, sheds light on the nature of autism itself.

The introduction is available for free online here. The book includes contributions from Simon Baron-Cohen and his research team, Temple Grandin, Laurent Mottron et al, whose research team includes netizen Michelle Dawson, and Allan Snyder (whose research the Eide Neurolearning Blog discussed here).

And to be clear, I recommend this book both from an intellectual perspective (interesting read!) and from a personal, parenting perspective. This book gave me a glimpse under the hood, and I'm not referring to talent (because to do so with a 4 year old is a little silly). I'm referring to the bias to local processing and the differences in sensory discrimination and processing. The entire book is evidence-based theorizing by some of the world's most respected researchers, but it's written in non-technical speak, so the every-mom or every-dad can understand. It also includes information (and, I think, messages) specifically directed towards us parents, as to how to develop talents. (Hint: regarding talent as maladaptive is not encouraging to the subject!)

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

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

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

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

Into the room I barge.

"What happened?!?"

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

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

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

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

Lies I Told Myself

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

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

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

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

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

Speech Update: Four Years, Three Months

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

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

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

Excerpted from the report, for your information and amusement:

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

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

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

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

The good news: The perpetual tough grader wrote:

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

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

Quick Hit

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

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

Have a great holiday!

Epilogue.

Thanks for the well-wishes and the insight.

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

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

Annual Physical.

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

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

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

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

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

And now he is four.

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

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



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

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

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

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

As promised, a WTE post on speech and communication.

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

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



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

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

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

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

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

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

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

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

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

Engagement is a difficult thing to describe.

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

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

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

Quick Hit

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

One is Silver and the Other Gold

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

***

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

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

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

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

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

And this:

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

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

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

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

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

Quick Hit

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

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.

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.