Thoughts on Newtown

In no particular order:

1. Feeling a planet of grief and sorrow for those lost lives, the survivors and those who lost loved ones.
2. I'm not aware of a cogent argument in favor of legal possession of automatic assault weapons.  And if there isn't one, why is it legal?
3. I fear stigma and prejudice because the shooter was reported to have asperger's
4. This is incoherent.  Jared Loughner has schizophrenia and, as a result is, disabled.  Does ASAN believe that there is no connection between his disability and his actions?
5. People across the neurological spectrum - from neurotypical to asperger's to schizophrenia - have murderous impulses.  And someone who has murderous impulses is probably more likely to carry out the commission of a murder.  Murderous impulses may correlate to gender (e.g., male) and it may correlate to a neurological condition or a mental illness (e.g. sociopath) or it may not (e.g., the Oregon mall shooter).  But to focus on screening a certain group misses the point because perfectly sane people have murderous impulses.  To make this world safe for our children, prevention must focus on preventing a person from converting that murderous impulse into a murder: gun control.
6. If the mother of the shooter didn't die, she'd have blood on her hands.  She failed to secure her cache.  If you own a gun, and you fail to secure it, and that gun is used in the commission of a murder, it may not be a crime, but in this blogger's opinion, you are morally culpable.  If you can't secure your gun, don't own a gun. Period.
7. Congress and the President have blood on their hands for not waking up sooner.

Quick Hit: The Man vs. the Therapeutic State

The Man vs. the Therapeutic State:

As Marcia Angell, former editor of The New England Journal of Medicine, observed last year in The New York Review of Books, “there are no objective signs or tests for mental illness…and the boundaries between normal and abnormal are often unclear. That makes it possible to expand diagnostic boundaries or even create new diagnoses in ways that would be impossible, say, in a field like cardiology.” In other words, mental illnesses are whatever psychiatrists say they are. 

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.

Proposed Revisions to the Diagnostic Criteria for Autism Spectrum Disorder

As you may have heard, the American Psychiatric Association has proposed sweeping changes to the diagnostic criteria for autism spectrum disorders (ASD). As a result of these changes, it is estimated that 45-80% of those previously diagnosed with an ASD will no longer qualify for that diagnosis. I understand that there may be a new substitute diagnosis referred to as "social communication disorder", which may be applied to those who no longer qualify as having an ASD.

There are so many Big Issues that I don't feel qualified to weigh in on here. Will this lead to a more or less just allocation of resources? What about the issue of identity? After all, "asperger's" is more than just a label; there are huge swaths of people who identify as "asperger's." You can switch up a diagnostic manual, but you can't just take away a sense of identity from people. Will those with asperger's coalesce around the new label ("social communication disorder")? How will these changes affect my son? These are fascinating questions. I don't have answers.

I'm writing in reaction to a post I read by another blogger, and I'm just writing to put my anecdotal experience out there. Writes another blogger whom I admire and respect (emphasis added by me):

I do understand that the surge in ASD diagnoses has placed a huge burden on the healthcare system and school budgets. If it's true that a large fraction of ASD kids are improperly diagnosed today, it would stand to reason that the services currently being delivered are not needed. If so, where is the outcry over waste? There isn't any, because it's universally accepted among recipients that the services ARE needed.

With all due respect, I wouldn't say that this is universally accepted. May I direct you to Exhibits A, B and C. Not every child benefits from intensive ABA. The agency we used at one point told us Bradley doesn't need the services they were providing. They set up goals for him, recorded his progress in a binder and it soon became obvious he wasn't enough developmentally impaired to benefit from the program. He maxed out very quickly, meaning he met all the goals they established. In hindsight, this was a colossal waste of resources when you consider the cost of ABA and the children in other communities who are much needier and who don't have access.

You may counter that my family is in the minority because I am in Massachusetts where services are abundant. True, but autism advocates lobby national companies to add an autism benefit. If a national autism benefit were added, families like mine represent potential claims experience - a substantial liability with respect to which the benefit of coverage is uncertain. The new definition of autism represents a way to manage that liability and tie it more closely to a population that is more likely to benefit from the services. Managing that liability may, in turn, result in increased coverage. For this reason, my at-first-blush reaction is that the revised definition will be beneficial.

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.

Four Years

It's hard to believe, but I started this blog nearly four years ago. To put it into perspective, back then Brad was nonverbal, blogging about diagnostic labels was unusual and the biggest social network was Myspace.

Things have changed...for the better.

And to usher in the new era, I've updated the design of my blog. Hope you like.

Back To School Video

Interview subject has the sillies.


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

What happens in Fight Club...

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

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

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

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

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

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

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

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

But then...

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

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

Back To School

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

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

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

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

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

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

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

Update

Hey all,

Sorry for the infrequent updates.

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

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

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

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

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

One Person Book Club Revived

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

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

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

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

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

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

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

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

Gone fishin.

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

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

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!

I'm Back.

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

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

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

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

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

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

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

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

So what's new with you and yours?