Halloweenie

Happy Halloween!

DH Guest Blogging Today...

Brad's dad, chiming in:

To disclose or not disclose?

We struggled with this question in the wake of Brad's diagnosis. So here’s my after-the-fact 2 cents. I honestly think there’s no one who you “must” tell right away, other than perhaps close family and your other children that are old enough to understand the situation. Maybe you wait a few weeks or months to tell the grandparents, particularly if they won’t be seeing your child in person for a while or if you’re in line to get a more thorough evaluation or second opinion. Their generation tends to be very out of touch with what an autism diagnosis means today. To them, autism most likely conjures up images and ideas that bear little semblance to Brad.

And then there's the issue of those who don't know. What to do when other parents go on and on to you about all their children’s developmental progress? Or complain that their child is nominally late doing x, y or z. We know bragging and complaining is just what parents naturally do, and there's no reason they shouldn't. We notice it because of our own heightened awareness. We try not to let it bother us. We try to be as happy for others as we are for ourselves and our own family. In a similar vein, we also make a point not to get jealous of other families who seem to have it easy compared to us. It’s hard not to fall into a trap where you think other people don’t have their own problems, but we realize that nearly every family has its issues (more so than ever in these economic times), even though some might not be as life affecting or day-to-day as a child on the spectrum. We adore Brad so much and we love our family just the way it is. Brad is a blessing.

The Countdown, Part II

We're living on borrowed potty time. See, when Jeremy was born, we bought two of the Neat diaper system, which is comprised of a diaper pail and special bags. The Neat system was discontinued in 2007, at which time we stocked up on the bag refills.

Here's all we have left.

That's 8 refills. Each refill lasts approximately 1.5 weeks. So that's about 3 months.

I will NOT buy a new diaper pail. I got suckered into one diaper pail racket - never again.

As of today, Brad does "potty time," but he doesn't get it. He doesn't hold it in. He has peed in the potty a few times, but it wasn't his idea. I've given him underwear time twice, just to give him the experience of peeing himself.

That's the status. 8 refills to go. The countdown starts.

The Countdown, Part I

I mailed the paperwork to my town's public school system. After they receive it, the clock starts and they have 45 days to do evaluations and come up with recommendations or a plan. Brad turns 3 on January 22. To be continued.

Brad and Jeremy playing.

This is truly a source of happiness and pride for me.



Brad is still floppy - we're still working on that. But he's come so far in terms of speech and social. I couldn't be prouder - of him.

The Truth About Jenny

The overwhelming scientific evidence discredits the theory that vaccines cause autism.

But that doesn't stop Jenny McCarthy from hysterically claiming that vaccines caused her son's autism, most recently as part of a cover story in my beloved guilty obsession, Us Weekly. I shudder at the number of women of child-bearing age who will read this story and be terrified to vaccinate.

For anyone who puts stock in the subjective testimonial of Jenny McCarthy, consider the source. No, I'm not going to link to the crass Candy ad. Or the Playboy pictorial. I'm linking to a report that Jenny McCarthy runs a group called indigomoms.com. The group has since been deactivated, at the behest of her handlers.

Who are indigo moms? In short, they believe their blue-eyed kids are psychic. Watch this Good Morning America segment to learn more (or just to get a really good laugh, the good part is at 1:33 min.)

Abc News Segment About Indigo Children via 31337videos.com





Related: "Indigos", "Crystals" and Jenny McCarthy

Open Letter...

...to Denis Leary, who joins Michael Savage in describing diagnosed autistics as most likely stupid or lazy:

Dear Denis,
From one Bostonian to another, I'm here to tell you that my autistic kid is wicked smahhht. This is him "reading" a book:



Also, you look like a lesbian.

Best.

Laura

Are we pathologizing personality?

So asks commenter Polly. It's a compelling question.

Polly hypothesizes that conditions like autism and ADD are not disorders, but rather the manifestation of certain personality types under the Myers-Briggs Type Indicator. She writes:

What I've found is that in places like Wrong Planet, people are aware of MBTI and that many of them type INTJ or INTP, which are among your typical engineers, and tiny percentage of the overall population. Incidentally, Einstein is often anecdotally typed as INTP....

The people making the rules, who decide what acceptable behavior is, are usually SJ [ed. Sensing, Judging] types (most elementary school teachers are ESFJ, I read that
in People Types & Tiger Stripes), so SJ kids (who are wired to be cooperative and follow the rules, and generally are the kind of kids unimaginative teachers like to have in classrooms) get to have standard language disorders. There aren't all that many NF [ed. Intuition, Feeling] types, but I'd say they land in with the ADD or the ASD depending on their total personality mix.

As for ADD, and I know I'm just spouting on this, I've been known to joke that the introverted SP [ed. Sensing, Perception] types get that label (extroverted ones get ADHD), the NT [ed. Intuition, Thinking] ... types get ASD. [Editorial notes and links added.]

Indeed, the blurring of the line is seeping into pop culture, as evidenced by this "Wired Wiki" entitled "How To Deal With Your Mild Autism." The Wiki reads:

Einstein likely had it. Mozart, too. Even BitTorrent creator Bram Cohen. No wonder Asperger's — a mild form of autism — is known as the geek syndrome. If you feel awkward in social situations, have obsessive-compulsive tendencies, and are overly sensitive, you may have it as well.

The problem with this theory, in this blogger's opinion, is that it in effect reduces autism to just a social impairment and does not take into account communication impairment or other neurological symptoms, such as impairment of executive function, hypotonia, dyspraxia or ataxia, not to mention the host of other physical symptoms that correlate to autism, such as seizure disorder and gastro-intestinal problems. Personality doesn't tell the whole story. Plus, engineers and other math types often have the personality without the litany of neurological symptoms. In my opinion, it is more likely that autism impairs the subject's ability to intuit verbal and/or nonverbal social cues which, in turn, causes social impairment and results in social introversion and the other traits which characterize INTJ and INTP.

Added: Polly clarifies: "When I listed those personality types as corresponding to pathologies, I intended to tie the idea of an underlying brain glitch as manifesting in different ways depending on the underlying temperment, not to claim that there was no glitch."

This Thing is Like That Thing, Part II

Shades of Einstein redux. The London Times [via About.com] reports on a new study showing that autism genes "add up to genius":

The finding has emerged from a study of autism among 378 Cambridge University students, which found the condition was up to seven times more common among mathematicians than students in other disciplines. It was also five times more common in the siblings of mathematicians....

Separate studies have shown that the fathers and grandfathers of children with autism are twice as likely to work in engineering.

Correlation between autism and having a father in engineering is, in part, what drew me initially to the Einstein Syndrome when Brad was first flagged for autism, and I had a rather myopic view of what autism is. My husband went to MIT, my father in law is faculty there, and my grandfather was also an engineer - all signs that Brad had "einstein syndrome." This seemed like a suitable life-raft for me to cling to at the time.

I've since rejected the einstein syndrome hypothesis for several reasons which I have blogged about. The study excerpted above is further evidence that the genius/idiot paradigm upon which the Einstein Syndrome rests is false.

The London Times article quotes autism research luminary Simon Baron-Cohen:

Our understanding of autism is undergoing a transformation.

It certainly is. Certain present company excluded.

TGIF

We're going to Vermont this weekend, to take in the foliage and chill out. I leave you with autism on Supernanny. It includes a demo of ABA, for the curious/uninitiated. For the child featured, you will note two things about ABA: (i) it appeared to work in the short-term, to some degree; and (ii) it takes a lot of resolve. You don't dabble in ABA; you commit to it. As I have blogged, we don't believe that one size fits all when it comes to treatment. We didn't use ABA, and we are happy with our decision. But each parent should assess all of their options independently, including ABA.

Have a nice weekend, everyone.

Added: Just to clarify, I'm not anti-ABA. If I'm anti-anything, it's the idea Patience alluded to in comments - that ABA is a panacea, without which all children on the spectrum are doomed to a life of low IQ. That having been said, I believe that ABA can make a significant difference in quality of life for many. Treatment decisions are highly personal, and they reflect clinical evidence, as well as the family's norms. And for that reason, I'm not doing anything other than saying "this is what worked for Brad."