If you are here for genealogy, try this: http://walkitout.livejournal.com/tag/genealogy

I write about whatever I am thinking about. It helps me think about it and sometimes, remember it later. Because I live far away from many of my longest term friends, we don't always get to participate in each other's daily life; sharing my blog is a second-best.

My interests change over time, but at any given time, I am usually very intensely interested in a few things. This might look more organized and logical than it really is.

If I had a nickel for every time I read this phrase in connection with PDD-NOS and/or Asperger's, I'd be over two dollars by now. Not enough to matter to me (or, really, anyone living in a developed nation), but still.

I mention this because I've been attempting to find an activist -- any activist -- who works in the area of autism who is explicitly supporting what the DSM V work group is doing. And no, I don't have a definition for "activist"; I'm operating in I-know-it-when-I-see-it mode.

Along the way, I ran across the study described here:

http://www.jhsph.edu/publichealthnews/press_releases/2012/lee_autism_diagnosis.html

And forums in which people were discussing secondary coverage of this press release. Unfortunately, the secondary coverage turned "autism spectrum disorder" into "autism", and then literal-minded readers turned that into "not PDD-NOS" and/or "not Asperger's". Including, I might add, people who claim to be pros providing dxs. The punchline here is that when someone suggested that "autism" might mean "spectrum disorders", the pro assumed that meant Asperger's and _apparently forgot the existence of PDD-NOS_.

It's important to remember PDD-NOS, and here's why. (1) It has another name: "atypical autism". Thus, _it's autism_. and (2) People who didn't qualify for classic autism or Asperger's (often because the severity wasn't there for the former and the had a clinical language delay and thus didn't qualify for the latter) often get a PDD-NOS tag.

The existence and use of PDD-NOS is one of the reasons why I think worrying about loss of diagnosis is behavior that should be considered diagnostic evidence for _having_ ASD. People adapt to systems. Well, neurotypical people do, anyway. If a system doesn't give you a way to slot someone who clearly needs a slot, you just find another slot. If this feels wrong to you or you believe this won't happen, that's evidence that you think literally and concretely and are unresponsive to real world evidence that runs contrary to your way of organizing information. In particular, x-NOS tags have become so ripe with alternative uses that DSM V is trying desperately to provide _appropriate_ slots so we can do actual statistics on diagnoses that are consistent across time, context and clinician. Which, honestly, a spectrum-y person ought to just adore.

ETA: Also, I've been thinking about the Pharma conspiracy aspects of resistance to combining classic autism/PDD-NOS/Asperger's, turning BPD into a spectrum disorder, etc. That is, people fear that these changes are being quietly engineered by drug companies so they'll make more money. The people involved in this process, and the therapies likely to be prescribed as a result of the new system tilt pretty hard in the direction of CBT. You want a conspiracy theory? I'd look there. Also, for job opportunities.

http://www.psychotherapybrownbag.com/psychotherapy_brown_bag_a/2009/11/the-fate-of-aspergers-syndrome-in-dsmv-a-followup-to-last-weeks-article.html

Read the whole thing. It's really good -- way better than anything I'm likely to come up with and does a nice job tying in with some of the then-current articles on the subject.

Anestis is careful, professional, polite and thorough in his analysis and argument without in any way conceding his point. I _love_ this.

The first two comments are from Baron Cohen and Anestis and are very collegial without agreeing (a skill I aspire to!). It seems clear from where I sit that Baron Cohen has a fundamentally conservative (not in the anti-gay, anti-abortion sense, but in the must-have-an-excellent-reason-to-change-things-not-just-a-few-good-ones) stance to many, many, many ideas, and Anestis ... does not.

The piece and the followup remarks also manage to stay on topic with respect to real world impacts: they talk about impact on _services_ not impact on _drugs_. There are people prescribing drugs for ASD. They probably should not be doing so, altho comorbidities have to be handled on a case by case basis.

I decided to take a closer look at the revamp of Personality Disorders in DSM-V. I have a long-ish standing interest in Borderline Personality Disorder, because I've run across people (_not_ friends of mine, but friends-of-friends) with this diagnosis and they really stand out as Trouble. I've never been able to make much sense out of the diagnostic criteria in DSM-IV, and quite a lot of my shorthand understanding of who winds up with this diagnosis isn't even in the criteria (the shortest of my short forms is, "cutter = BPD" -- and yes, I'm not a pro and yes, I understand this is actually not entirely accurate).

DSM-V has made a really big change to the way Personality Disorders are handled. They've moved from a set of criteria (must have n/2 or more of n items on a list to get the diagnosis and if you are on the edge, you'll lose eligibility for the diagnosis if you lose a single item on the list even tho the diagnosis is supposedly life-long or at least chronic) to a hybrid model of traits and types. The idea is to capture elements of who-the-person-is (think five factor model of personality) to describe better how the personality disorder will manifest as well as what-in-particular-is-broken to capture pathological behaviors/approaches/thought-patterns/etc. For some of the PDs, they've done a detailed match-up of the traits and types, but quite a few PDs went away. The rationale is that a lot of people clearly had a PD but didn't qualify for one in particular -- and some people qualified for more than one, when that's not supposed to happen either. The new approach is, like everything else in DSM-V, supposed to lead to better consistency of diagnosis over time and practitioner AND to reduce dependency on X-NOS coding.

I had to puzzle over this for a while to understand what they were doing and why, and then my brain kinda farted and I went, hey, this is like my modules theory! Instead of coming up with One Name to describe what a person has or is, try an analytical description and then address the pieces that are problematic. So I think I wholeheartedly approve, altho I'm now curious to read more of the diagnostic descriptions to see what I think of the implementation.

I'm really impressed by what's happening with DSM-V. The people running this round are being extremely diligent and careful and professional. Nor does it hurt that the way they think about mental health appears to run along very similar ideas to the way I think about it. ;-)

What I really like, however, is their minimalist approach is driven by an effort to find the parts that disparate theories hold in common. This is where I would expect to find stable ground.

From the Rationale section for Borderline Personality Disorder:

"Impairment in self and interpersonal functioning is consistent with multiple theories of PD and their research bases, including cognitive/behavioral, interpersonal, psychodynamic, attachment, developmental, social cognitive, and evolutionary theories, and has been viewed as a key aspect of personality pathology in need of clinical attention (e.g., Clarkin & Huprich, 2011, Luyten & Blatt, 2011, Pincus, 2011)."

That is just fucking brilliant.

If you have the time, go explore the proposed revision.

http://www.dsm5.org/Pages/Default.aspx

Wikipedia will help you out with the jargon.

When I only had one child, T., and he was quite small, he needed fairly regular outings to, er, avoid driving everyone around him nuts. He wasn't the only kid like that. At various points in time, he was highly car-averse, so we had to come up with walkable/strollerable/bikeable options. But when he was okay with a car ride (or really liked a car ride), we could go further afield.

We went to Pheasant Lane Mall for a variety of reasons: they had a Target attached to the mall (and the Target was open earlier than other stores), they had kiddie rides, it was the closest good-sized mall, etc. When we moved to Massachusetts and had a second child, we tried to find a good hang-out location: we found malls with small trains, kiddie rides, a carousel, etc. But an attached Target was hard to find, which meant if you went early in the morning (before 10 a.m.), you couldn't do much at the mall.

I hadn't really put this together until arriving inadvertently too early at Solomon Pond today. Over the last 20 years, the population of moms-available-to-go-to-the-mall-during-the-day has swung very hard towards moms-with-very-small-children (the rest tend to have jobs and go to the mall in the evening and on weekends like everyone else). During that same time frame, moms-with-very-small-children have swarmed places like aquariums, children's museums, science museums, etc. with strollers and forced those estimable cultural destinations to adjust their offerings (and facilities in some cases) to accommodate them. But the malls haven't really done anything to help out.

Which seems outrageously, baroquely, stupid.

What am I missing?

ETA: Target and Wal-Mart hours have consistently extended earlier in the morning than mall hours, and their market share growth probably wasn't driven solely by their pricing.

I have actually been to the mall in the not too distant past. However, most of my trips to the mall are motivated by the desire to buy a pile of clothes from Lane Bryant. There's a Gymboree in town, so I don't usually go to the mall for that, and Hanna Andersson stuff is usually bought via the website. Zappos supplies my shoes. Etc.

Anyway.

A while ago, the guy who set up the retail operation for Apple went to JCPenney. He brought with him some folk who had worked with him at his previous job at Target/Dayton, IIRC. I thought this was pretty cool, especially when I heard they were going to fix their pricing strategy. I was going to wait until August so they'd have plenty of time to get all the problems fixed before I checked them out in person. They hired Ellen DeGeneres and in this month's catalog -- May, of Mother's Day -- they included some lesbian moms in their families. This set off the second boycott from a group of Particularly Evil Christian Women, and reading Jezebel's coverage of same pushed me over the edge. I went to go give them money today, hopefully in exchange for something that we could use around the house.

I got some great stuff. In addition to some cute jeans (a pair of crop and a pair of full length), olive crop pants and a couple of tops, I found a handful of Angry Birds t-shirts for my son. A good sized bag of clothing came in at almost exactly $150 -- comparable to a trip to Target, possibly slightly cheaper, and I was not shopping clearance racks or May promotions or "best prices" consciously: I just bought things that I thought looked good off the regular racks and happened upon some promotions and otherwise bought regular price. The store was clean, well-lit (easy to see everything but not painfully bright and only one flickering bulb caught my attention) and neat. The racks were not perfectly ordered (sizes out of order, styles intermixed) despite the fact that I was the first person through the mall entry when the gate was pulled back. In multiple departments, I had to go up on tip-toe to remove things from high shelves or racks which were not also available on lower shelves and racks. This is a problem, because I am 5'7" ish (ish on the high side of 7, not the low side). If I have trouble, an average woman shopper might not be able to manage. The fitting room furnishings are attractive and recently refreshed, however, the hardware (hooks, rails) are not consistently installed correctly (pulling away from the wall, slanted in a way that reduces their functionality).

In short, JCP is well on the way to being an enjoyable shopping experience and one I will include high on the list when I want some new clothing for myself or my children. I anticipate they'll get the rest of the bugs worked out as they go along (it took Target the better part of a decade to figure out how to get the fitting room hooks right, IIRC, and the JCP hooks are _much_ more appealing aesthetically which suggests the problem will be more difficult to solve).

I screwed up slightly in that I headed out the door more or less as soon as the kids were gone, arriving at the mall (about 20 minutes or so away) a little after 9:30 a.m. Thus, the only store open seemed to be Sears (and while I do shop Lands' End online, my last experience in person in a Sears branded store was negative enough to really put me off and I haven't seen news to make me recover just yet). I got a coffee at Starbucks and read news for a while, which is how I walked into JCP right as it opened. I'm not sure what I think of mall hours. They seem a little inconvenient and I'm wondering if I'm the only person who feels that way. I know why they were that way in the past (an artifact of school hours and mothers of school age children being the most likely employees and customers), but I'm not so sure that makes sense in the present.

The Amazon home page today announces the Harry Potter books are now available through the Kindle Lending Library. I'm not sure that I have anything useful to say about this, other than that if you're selling ebooks and you aren't Amazon, ow. Ow. Ow. Ow.

Okay, not useful, but aren't _you_ wondering how much they paid for this? I sure am.

Anyway.

Second remark: news coverage of DSM-V has been a little ridiculous all along. I think, however, it has hit a level of ridiculousness deserving of some sustained mockery. If I can't find a satisfying source of mockery, I may start doing it myself. Just to be clear: I'm not proposing to mock DSM-V. I'm proposing to mock the _news coverage_ of the process. Because it's almost uniformly horrible.

T. has had summer programs since he turned 4, provided by the school to prevent regression. This is the first year the summer program won't be through the preschool. And this is the shortest program offered yet. Seems ridiculous -- and it may yet change, if his placement for next year is changed. *shrug*

In the meantime, I'm staring at a lot of open Fridays, and two open weeks not covered by either of our vacations or the summer program. Is there day camp for T.?

One town over has what looks like an amazing inclusion program offered through the town but open on a space-available basis to non-residents. Unfortunately, registration was back in February. My bad -- should have been researching this months ago, apparently. I've sent a half-hearted email for the one-week program that would fit our schedule.

When I finally got the sped director at my son's school on the phone to discuss a variety of issues (including the summer program issue), I asked her if she had any ideas for activities for him. She mentioned that in another neighboring town, there's an aquatics/fitness facility with a therapy pool (warm water). T. actually doesn't really care about the water being warm, but A. does. So a long e-mail off to their special needs coordinator explaining our schedule and what I'm interested in (private lesson either for both together or each separately).

Then, on a lark, some googling (okay, this is actually how I found the neighboring town program, but I'm telling this out of order for narrative purposes) on autism and day camp. And about three towns over (but still within a half hour, more or less), a super cool program that will even supply a 1-1 aide if you pay them extra (the neighboring town program will let _me_ supply an aide, but I have to find and background check them myself -- and pay, duh -- which I actually can do, but was hoping to have that person hang out with A., instead). I used their website to request a DVD and a phone call.

If you're thinking, gee, what's up with all the activities, why can't you just let the kids hang out? Oh, we'll be doing plenty of that, too. But I'm not prepared to spend the majority of an August week scootering and cycling and generally hanging out on hot pavement. Which is almost certainly what will otherwise happen.

Altho I also bought an inflatable boat and PFDs for the whole family, just to see what kind of trouble we can get into on a pond, lake or river nearby.

It's been a little busy around here so I've gotten behind. Perhaps I'll catch up this week.

I received a letter from Friesland, from one of my father's first cousins; my daughter is her namesake. I first visited her and her husband in January of 2002. My aunt had reconnected with her a few years earlier, presumably after going through her father/my grandfather's papers and finding more information about the family my grandfather left behind when he immigrated to the United States, following one of his older brothers, in the teens (his and the 20th century's). I visited again with my then fiance but fell out of contact after my children were born and a couple cross country moves reduced my usual orderliness to a shocking degree of chaos.

Anyway. Her son got in touch with me via ancestry.com and urged me to write a letter and confirmed a valid snail mail address and so, I have mail from Friesland. (In addition to telling her a little about the last few years, I answered the question she had asked me about her uncle/my great-uncle and what happened to his daughter, one of the questions that send me to Ancestry.com in the first place.) It is of course wonderful to be back in touch and, as a little hobby bonus, she had an answer for a persistent question I had about my grandfather's oldest brother. Turns out he had more than the one son. Specifically, _8_ more children, some by the first wife whose death record I had and the rest by a second wife I didn't know a thing about.

Even the Frisian side of the family (that I know of) has lost contact with the second family. I'm early in the process of googling about for stambooms, in hopes that someone on that side is (a) interested in genealogy and (b) has put something online, but thus far, nothing obvious has appeared.

You know how very small children chew on stuff on and off and then they outgrow the habit or the impulse disappears from their lives or whatever? You know how some older kids and adults never really stop chewing on things, even after they've freaked everyone out by sucking on their hair, chewing pencils to slivers (that make their gums bleed), etc.? There might be an anxiety disorder involved. Do everyone a favor (the person, their parents or other family members, people who are in their general environment, their teachers, etc. -- but mostly the person) and buy them some of these. You can get them on breakaway lanyards, so if the kid wears them around the neck and gets on a bike you don't have to develop an ulcer worrying about the strangulation hazard. If they tend to take off the lanyard and leave it places, you can get it on a retractable belt thing (like a badge or keycard at work) so they have it at the ready but it doesn't fall to the floor, into the toilet, etc.

The product claims to be BPA and pthalate free, which is good. Do _not_ believe anyone who tells you these are indestructible. My son has already put a hole through one of the train charms and he chewed on it for less than a week. But it only takes him twenty minutes or less to destroy a pacifier and maybe an hour to ruin a shirt collar. Days of chomping before disposal is a minor miracle.

Best of all, it truly does seem to satisfy and calm some basic and otherwise impossible to suppress urge.

Sensory University makes a bunch of other cool products (including the tangle, which I find very satisfying when I'm feeling an impulse to twist or fold or shred things). You can buy them a variety of places online, including Amazon. One of these products is something that fits onto the top of a pencil, nice for inveterate pencil chewers and even more stealth than the chewy charms (but, alas, chokable, so use some discretion with these around younger children).

Amazon has a corporate-life-long history with the New York Times. Bezos had the bright idea early on (_really_ early on) to buy birthday greetings for authors in the NYT. Cheap advertising for a new bookstore, appropriate branding, Feel the Love, etc.

When the NYT first profiled Amazon, they gave us a little warning; they knew that all that attention could wipe out a website. We did okay, and I set up a betting pool on how much our revenue would be (in retrospect, wow, were those small numbers, but at the time, they seemed huge) in the days immediately following.

In the decade and a half since, NYT coverage of Amazon has varied in style, substance, accuracy, etc. Here's a recent entry:

http://www.nytimes.com/2012/04/30/business/media/byliner-takes-buzz-bissingers-e-book-off-amazon.html

Roughly: Byliner published a short by Bissinger called "After Friday Night Lights". Its presence on Amazon contractually prevented the price it was sold elsewhere to be lower than its price on Amazon. Enforcement is automatic: a bot that spots a lower price somewhere else drops the price on Amazon to zero, if I understood it correctly. Apple decided to promo the item at a lower price. Byliner told Amazon in advance.

"In an e-mail later, Mr. Bryant said that when the company told Amazon about the promotion, before it began, Byliner was warned the price might drop to zero. But, he said, “we hoped that wouldn’t happen.” It did."

Which makes other quotes in the article ("Stunned"!) look a little odd. Whatev, right?

This _is_ what happens when you have Most Favored Nation contracts, and in this particular industry at this particular time, Apple was the one who started that kind of clause so surprise seems uncalled for.

Well, surprise is called for. Who would have thought in 1997 that in 2012, the NYT would be getting the word out to all and sundry that the enforcement division at Amazon should be taken Very, Very Seriously?