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.  

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.

"I was normal, for what I am."

My latest entry in my One Person Book Club is Look Me in the Eye, by John Elder Robison. Robison happens to be the brother of Augusten Burrows, who authored Running With Scissors (upon which the movie of the same name is based). However, Robison is accomplished and interesting in his right. Also: he's a good netizen.

Look Me in the Eye is a great read from start to finish. Parts of it were informative, explaining how an Aspergian thinks. But the bulk of the subject matter is a compelling story having little to do with Aspergers itself, narrated with a strong Aspergian voice. So, more often than not, he shows the reader how he thinks, rather than tells us.

Robison was not diagnosed with Aspergers until he was in his 40s. He writes, of reading about Aspergers:

Just reading those pages was a tremendous relief. All my life, I had felt like I didn't fit in. I had always felt like a fraud or, even worse, a sociopath waiting to be found out. But the book told a very different story. I was not a heartless killer waiting to harvest my first victim. I was normal, for what I am.

This passage left a strong impression on me. My journey has caused me to think a lot about what the label means. I've blogged about what I think the label means in the objective sense, and others have chimed in about how they perceive the label - some positive, others negative. Often overlooked in the debate is what the label means for the individual with the condition. What I gather from the account of Robison and others is that with the label comes a sense of understanding and a sense of community and pride.

And so while others concern themselves with the negative stigma associated with the label, I'm struck by the importance of the label with respect to identity. Imagine if you were ethnically diverse or racially diverse (in a nonapparent way), and your parents never told you to spare you negative judgement by ignorant people? This is, in part, why I think it's harmful to dodge the label.

I thank Robison for his emotional honesty.

Brad on film.

Brad's SLP is filming him today. She's taking a class on Floortime, and he's her case study. We're just happy to help her in any way we can, after all she's done for Brad.

Progress Report, By the Numbers

Brad at 24 months
Per Early Intervention -

Receptive communication: 10 months
Expressive communication: 14 months

Brad at 31 months
Per Mullen Scales of Early Learning, administered by Brad's developmental pediatrician -

Receptive communication: 30 months
Expressive communication: 35 months

Bottom line
Receptive language: 20 months improvement over 7 months.
Expressive language: 21 months improvement over 7 months.

(Wow!)

Brad having a conversation.

Stability of PDD-NOS, Part I: The Research

What follows are a series of abstracts concerning the stability of autism spectrum disorder (ASD) diagnosis, including PDD-NOS. [Emphasis throughout is mine.] Each study concludes that certain children diagnosed with ASD at an early age can later lose the diagnosis.

***

Diagnostic Stability in Very Young Children with Autism Spectrum Disorders.
1: J Autism Dev Disord. 2007 Oct 9; [Epub ahead of print]

Autism Spectrum Disorders (ASD) diagnosis in very young children may be delayed due to doubts about validity. In this study, 77 children received a diagnostic and developmental evaluation between 16 and 35 months and also between 42 and 82 months. Diagnoses based on clinical judgment, Childhood Autism Rating Scale, and the Autism Diagnostic Observation Schedule were stable over time. Diagnoses made using the Autism Diagnostic Interview were slightly less stable. According to clinical judgment, 15 children (19%) moved off the autism spectrum by the second evaluation; none moved onto the spectrum. Results indicate diagnostic stability at acceptable levels for diagnoses made at age 2. Movement off the spectrum may reflect true improvement based on maturation, intervention, or over-diagnosis at age 2.

Variability in outcome for children with an ASD diagnosis at age 2.
1: J Child Psychol Psychiatry. 2007 Aug;48(8):79

BACKGROUND: Few studies have examined the variability in outcomes of children diagnosed with autism spectrum disorder (ASD) at age 2. Research is needed to understand the children whose symptoms - or diagnoses - change over time. The objectives of this study were to examine the behavioral and diagnostic outcomes of a carefully defined sample of 2-year-old children with ASD, and to identify child and environmental factors that contribute to variability in outcomes at age 4. METHODS: Forty-eight children diagnosed with autism or pervasive developmental disorder not otherwise specified (PDDNOS) at age 2 were followed to age 4. Diagnostic measures included the Autism Diagnostic Observation Schedule - Generic (ADOS-G) and clinical diagnosis at ages 2 and 4, and the ADI-R at age 4. RESULTS: Diagnostic stability for an ASD diagnosis (autism or PDD-NOS) was 63%, and for an autism diagnosis was 68%. Children who failed to meet diagnostic criteria for ASD at follow-up were more likely to: 1) be 30 months or younger at initial evaluation; 2) have milder symptoms of autism, particularly in the social domain; and 3) have higher cognitive scores at age 2. No differences between children with stable and unstable diagnoses were found for amount of intervention services received. Among the children with unstable diagnoses, all but one continued to have developmental disorders, most commonly in the area of language.

CONCLUSIONS: The stability of ASD was lower in the present study than has been reported previously, a finding largely attributable to children who were diagnosed at 30 months or younger. Implications for clinical practice are discussed.

Predictors of Optimal Outcome in Toddlers Diagnosed with Autism Spectrum Disorders Journal
Journal of Autism and Developmental Disorders

Received: 30 October 2006 Accepted: 14 November 2006 Published online: 6 January 2007

Abstract A diagnosis of autism spectrum disorder (ASD) is usually taken to be permanent. In this study, 13 two-year-old children with ASD lost the diagnosis by age 4, at which time they scored within the normal range on standardized measures of cognitive and adaptive functioning. No differences were found in symptom severity, socialization, or communication between children who lost the ASD diagnosis and children who did not, but children with PDD-NOS were significantly more likely than those with full autistic disorder to move off the spectrum. The clearest distinguishing factor was motor skills at age 2. Results support the idea that some toddlers with ASD can lose their diagnosis and suggest that this is difficult to predict.

And now back to our regularly scheduled programming.

I call this one "it's a blue-ie!"

On biomedical treatments, Part II.

Five more reasons I don't dabble with alternative treatments:

1) Profiteering;

2) No proof of effectiveness for autism;

3) Some of the treatments (e.g. chelation) are predicated on the theory that vaccines cause autism, which theory is unsupported;

4) Some of the treatments haven't been proven safe (see, e.g. hyperbaric oxygen chambers and "oxidative stress relief"); and

5) The morbidity rate.

Part of the problem, of course, is that these treatments aren't regulated and are not prescribed and administered by mainstream physicians, hence the "alternative" label. If one of the treatments described in this post were actually proven effective (by hard science, not subjective testimonials) and move over to the mainstream, only then would I consider them for Brad.

Motormouth of nonsense.

Sometimes Brad likes to say a word or a phrase, just because he likes the sound of it. He'll say it over and over again, laughing hysterically all the while. A sampling, in high rotation this week:

"Eat golfballs"

"Massachusetts"

"Pink lemonade"

"Dirty diaper"

Dog days of summer.

This video illustrates Brad's latest challenge.

Update

Bam! Overnight Brad developed a stutter. A significant stutter. So on top of being speech-delayed and scripting, now Brad's got a stutter to overcome.

I have no idea if it's temporary or permanent, or typical or related to autism.

To be continued...

My Brother Tom.

Actually, I don't have a brother named Tom. But the narrator of this video does. (Click on the top video.) Warning: it's a 10-hankie production.

Another entry in the one person book of the month club.

Over vacation, I read An Anthropologist on Mars: Seven Paradoxical Tales, by neurologist Oliver Sacks.

An Anthropologist on Mars is not a book about autism. Rather, it's a series of case studies which examine the brain's ability to reconstitute "self" or identity when it is injured or diseased. For example, one chapter examines an individual who suffered a severe brain tumor in his 20s. Another chapter examines Temple Grandin, the subject of Thinking in Pictures.

It's a fascinating read, with remarkable subjects. The common theme throughout the book is the nature of the injury or disease, and its relation to self. Of Tourette's, Sacks writes:

Any disease introduces doubleness into life - an "it," with its own needs, demands, limitations. With Tourrette's the "it" takes the form of explicit compulsion, a multitude of explicit impulsions and compulsions: one is driven to do this, to do that, against one's own will, or in deference to the alien will of the "it." There may be a conflict, a compromise, a colusion between these wills....

But the relation of disease and self, "it" and "I," can be particularly complex in Tourette's, especially if it has been present from early childhood, growin up with the self, intertwining itself in every possible way. The Tourette's and self shape themselves each to the other, come more and more to complement each other, until finally, like a long-married couple, they become a single, compound being. This relation is often destructive, but it can also be constructive, can add speed and spontaneity and a capacity for unusual and sometimes startling performance. For all its intrusiveness, Tourette's may be used creatively, too.

This concept of self echoes statements I've read from neurodiversity advocates. For example, autistic advocate Jim Sinclair states:

Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person.

Moreover, Sinclair rejects the designation "person with autism", preferring "autistic person". Sinclair compares describing an individual as a "person with autism" to describing a man as a "person with maleness."

As illustrated in Sacks' case studies, this concept of self is not unique to autism. In my opinion, while the "I" often fuses with the "it" in a theory of mind sense, the "I" does not negate the "it" in the biological sense. Autism - the "it" - exists independent of individual as a genetic condition. (Of course, the genetics are yet to be fully explicated.)

The analytic framework set forth above sheds light on the differences between the pro-cure and neurodiversity camps. In basic terms, neurodiversity advocates reject the separateness of the "it", while "curebies" refuse to acknowledge, or value, the impact of the "it" on identity.

Toddler logic.

Brad's theorem: whatever Jeremy has, Brad wants.
Jeremy's theorem: whatever Brad has, Jeremy wants.

And this is what happens when they play:



On the plus side, Brad has mastered one of his favorite sentences.

A Little Bit Autistic is on vaca until July 14.

Stay cool, and have a nice week!

Expressive speech update.

Brad has gone from putting two words together to phrases, and even a few sentences, including:

"I want that one."

"I like this song."

"Here you go, Jeremy."

He's still not understanding how to answer "yes" or "no".

Brad counting.

TGIF

On Siblings, by Brad's Dad

Brad is not our only child. He has a brother – Jeremy – who’s 21 months older. For the months since Brad was diagnosed, most of my thoughts and observations about his condition have related to the usual stuff – evaluation, treatment, services, and what the future might hold for him. I still think about these things of course, but now I also find myself wondering more often about the present and future dynamic between Jeremy and Brad – particularly whether/how Brad’s condition will affect Jeremy, both from the perspective of him as a person, and with regard to his relationship with Brad as his younger brother.

Brad adores Jeremy, who in Brad’s eyes can do no wrong. Brad takes cues from Jeremy when they play together, shadowing Jeremy and having a great time doing so. Lately, Brad will walk up to Jeremy and gently (or not so gently – Brad’s getting to be almost as big as Jeremy, and both are at or above the 90th percentiles for height and weight, so you do the math) push Jeremy, or grab his hair, or just tackle him. It’s very clear that Brad means it in a playful way, and does it to interact with Jeremy. Laura said - I think correctly - that it’s Brad acting socially like a kid about a year younger than him would. If you could see it, you’d realize that completely makes sense.

Jeremy loves Brad too, and usually will involve Brad in his play. Clearly Jeremy does not understand Brad’s condition, which is not surprising given that Jeremy is only 4. I figure that kids can begin to grasp the concept of autism around the time they can understand something like death or the value of money – does that sound about right? For now, Jeremy still sees Brad as a “baby”, which is how Jeremy pretty much views all kids who he can tell are younger than he is, and which is probably the way most kids Jeremy’s age would characterize a younger sibling whether on the spectrum or not. When Jeremy gets frustrated with Brad, it’s usually because he wants Brad to do or stop doing something right away, since trying convey a non-basic, time-sensitive message to Brad (like “don’t skip that song on the CD”) rarely meets with success. Usually when this happens, Laura, myself or our nanny (have we discussed her before? She’s beyond amazing BTW, and that might be an understatement) intervenes and we handle the situation. It’s nice that Jeremy is still young enough that he almost never dwells on anything negative; that has got to be one of the best things about kids his age. But I digress.

So as usual, this has led me to wonder about some things. We’ve all heard about how autism can affect parents and marriages, but have there been studies of the effects of having an autistic sibling? Can something like that even be meaningfully, let alone reliably, gauged? Do they tend to be more likely to have behavioral issues than other similarly situated kids who don’t have siblings on the spectrum, or is just the opposite – are they more tolerant and well behaved due to the increased patience they must learn in dealing with their autistic sibling(s)? Does it vary depending on the severity of the sibling’s autism? These questions can segue into the flip side – do autistic children benefit behaviorally from having a non-autistic sibling? How can that be measured? Is the benefit more pronounced when it’s an older sibling, or does that largely not matter?

Just a few more not so burning questions from Brad’s dad. Until next time…..