About this blog.

My son was diagnosed with PDD-NOS at 24 months. I created this blog to bring meaning to the often-confusing label. Sometimes I have answers. Other times, just more questions.

Thursday, March 26, 2009

Not that DSM-IV doesn't have me sufficiently confused....

...check out DSM-V. Well it doesn't exist yet. But here is a preview of issues that the authors will consider when revising DSM-IV. One that caught my eye is "Is Autism a Life-Long Diagnosis?" - a theme I have not only explored on this blog, but lived. Vicariously. Also interesting: the discussion of asperger's versus high functioning autism ("HFA"). What differentiates the two according to DSM-IV criteria is the presence of significant speech delay. But there is some debate as to whether the two conditions are etiologically distinct:
Asperger’s Disorder – is it Autism? In her introduction, Francesca G. HappĂ©, Ph.D., (London, UK) raised some of the key questions that have arisen regarding the diagnosis of Asperger’s Disorder, which was introduced into DSM-IV in 1994. These questions include: is there an ‘Asperger’ subgroup of autism with distinct cause, course, cognitive profile, and intervention needs, and if so, what is its relation to other ASDs?...Asperger’s disorder has...had an impact on family studies of autism with regard to what we recognize as “caseness.” Dr. Happe noted that the current criteria do not work: they do not allow for developmental change, the early language criteria do not demarcate groups with different prognoses, it is hard to apply the diagnosis for adult cases, and there is no clear conceptual basis for the diagnosis. Dr. Happe concluded that although there is a recognizable Asperger’s type and that some cases of classic autism grow into this picture, she wonders whether there may be a better classification schema. Sally Ozonoff, Ph.D., (Sacramento, CA), in her presentation, compared high functioning autism (HFA) with Asperger’s, and noted that there were few differences in their definitional DSM-IV criteria; both require two social symptoms and one repetitive/stereotyped symptom, both are in the average range intellectually and have current fluent language. The main criterion distinguishing the two disorders is the requirement in Asperger’s that onset of language occurs at the expected time, e.g., single words by age 2. Dr. Ozonoff noted that it is difficult to evaluate the literature since definitions vary across studies and that many children who are thought clinically to have Asperger’s actually meet criteria for autism (which supercedes a diagnosis of Asperger's). There is some evidence to suggest that Asperger's and HFA do not represent distinct disorders: they co-occur in the same families and do not “breed true” (i.e., family members of patients with Asperger's have HFA and family members of patients with HFA have Asperger's); children with autism who develop language have similar outcome to Asperger's; HFA and Asperger's are indistinguishable by school-age; and although studies find better language skills and/or verbal IQ in Asperger's, multiple studies have found no group differences in other neuropsychological domains.
Basically, we're in the abyss. I mean, I used to think, oh that CAN'T be a possibility for Brad. Silly me, looking for bright lines. I'll never learn! I have since downgraded "CAN'T" to "maybe not", bordering on "possibly some day in the distant future."

I figured this is worth a mention since a number of my bloggy friends are exploring asperger's.


A little boy just 2 years old said...

Thank you for that.

Nyx said...

Thanks for posting this. Only 2 months' post-diagnosis, I am still trying to get my mind around what is really going on here. I told my husband that I am beginning to suspect that the concept of the "autism spectrum" is like a bunch of ER doctors sitting around wondering about this "Broken Bone Syndrome" (that's BBS) they keep seeing. Gosh, they sure see a lot of people in there with a broken leg and a broken arm plus also bruises. Hmm, what if the leg's not broken? I guess that's the "Not-so-bad BBS." Well, what if the spine has been severed? Oooh ... well that's "Really really bad BBS." What causes BBS? We don't know, but we're pretty sure this is a "thing." These folks sure have a lot in common. Only, BBS would be a lot more like ASD if we imagine that the doctors aren't allowed to talk to the patients or X-Ray them. I still don't understand everything, but it sure is obvious to me that if the problems that these children are experiencing are coming from a lack of connections in the brain, then their problems will be different depending upon (a) how poor the connections really are; and (b) exactly which portions of the brain are actually affected. Meanwhile, it should be equally obvious (to me; of course I'm a layperson and have no idea what I'm really talking about, so this probably isn't really obvious to an expert:)) that if a set of behaviors or problems on the outside are caused by problems with brain connections, that there must be hundreds of types of things that could go wrong to mess up those connections. I guess we know that a huge number of these folks have inflammation in the white matter where the connections are supposed to be, but even so there must be lots of different things that could cause that kind of inflammation. Further, surely you could wind up "underconnected" due to injury or trauma, or maybe that whole under-myelination thing. At the end of the day, I really believe that arguments over DSM criteria is a red herring that distracts from the real issues we need to focus on if we are going to help our particular child: (a) do we think that our child is actually "underconnected," and if so can we figure out which connections are problematic? (b) if our child is underconnected, do we have any good ideas how it happened so we can try to do something to make sure it doesn't worsen? i.e., is this an autoimmune disease? if it is, should we follow an anti-inflammation diet? etc. (c) once we address whatever is preventing the connection (as best we can, which is maybe not at all, although I personally have become a true believer in the fish oil for some children), what sort of activities can we engage in that will help them to continually strengthen their personally problematic connections? Of course I haven't even read what these DSM people are discussing and I'm sure they are all very smart folks. BUT. Is it really helpful to try to create all these categories? Really? I just think there is no *there*there. Oh, and you may be interested to hear, if you haven't already, that they have demonstrated (as I understand it, to the satisfaction of conventional medicine, for what that's worth) that there is a subpopulation of children with ADHD who most certainly mature out of it. These kids' brains reach peak thickness (or something like that) about 3 years later than everyone else. Whether that's analogous or not to PDD I don't know, but I know that attention issues are often a big part of "PDD" and indeed it is often very difficult even for professionals to tell them apart. Did you know that according to something I read that 50 to 70% of kids with ADHD have some kind of language disorder? Very interesting to me. By the way, I mentioned the Mislabeled Child before, written by these very nice neurologists in Washington (nice enough that they emailed me back!) -- it is awesome for explaining all the different parts of the brain and how to identify the specific issues and tell them apart (like, e.g., prosody, by the way! multiple pages JUST ON THAT!), and even better, what you can do to help a child with issues in that particular area. But I would still like to really get to the bottom of what PDD is really all about. I wish I could stop time and then spend about a year or two doing nothing but reading and researching this stuff. Your blog REALLY REALLY helps though, because I don't have time to find all these resources you give us!

Nyx said...

LOL! I actually wrote my last comment before I actually read what they said. (sheepish). I can't believe the first comment was about ADHD! HA! You know, I really really wonder about that connection. To elaborate, what I didn't say before is that my family and my husband's family is "eat up" (as they say here in the south) with ADHD. Not a single person I know of with PDD. This stuff is soooo genetic. A nephew with ADHD (plus anxiety) look a LOT like asperger's to the uneducated. OK, it did to me. I really thought maybe that was what was really going on. But my mother (who is a psychiatrist) said she could tell in less than 5 minutes that it couldn't be true because in her opinion at least, no person who has true empathy can have PDD. If they have empathy, in her opinion, then there is something else going on that needs to be explored. Sadly, this didn't help me much because it's kind of hard to tell whether my 25-month-old son is going to develop "empathy" (I should say, without teaching him cognitive empathy). But then again, my mom only treats grown ups and finished her residency decades ago, so my experience has been that although she's good at her job she doesn't really "get" what's going on.

Laura said...

Well that's a mouthful! (postful?)

Is there any *there* there? I understand the question. I dunno. Is metaphysics (what IS autism) the aim of diagnostics? I would say that diagnostics and labels are used as a guide to provide treatment, allocate resources, etc, ie they serve a pragmatic purpose, even if they leave the metaphysical question unanswered. Also, from a sociological perspective, the labels can give the subject, ie our children, a sense of understanding and perhaps even community. So while the labels are imperfect, I think the goal is not misguided.

But I like your framework for analysis re connectivity, and what to do with that knowledge. Although, who's to say what level of connectivity is normal and what constitutes a deficit - and I don't mean that in the clinical/medical sense, I mean it in the normative sense.

I know nothing about ADHD. But you and Jann have officially piqued my curiosity: I'm going to buy Mislabeled Child.

Shari said...

Laura, I am reading The Mislabeled Child right now. You can get it at the library, although I think it would be a good one to have on hand. Reading their definition of autiism was encouraging to me. Then Ben had a bad day and I got discouraged all over again. (sigh) But there is a lot of info on the physical characteristics of the brains of autistic people. It's very interesting. It also talks about other learning disabilities and how they can mimic each other, and therefore a child is "mislabeled."

rhemashope said...

Someone just asked me the other day if HFA was the same thing as Asperger's. I did not have a good answer just saying that Asperger's was perhaps "higher-functioning" than HFA. Based on what you've cited here, I'm not the only one who is confused. I do not envy those who sit in the diagnosis research conferences.

goodfountain said...

This was interesting. Thanks for posting it!

The question that interest me the most is "Is Autism a Life-Long Diagnosis?"

Not b/c I want my child to "grow out of it" but b/c I wonder if there's a type of "developmental autism" - that they do eventually just kind of grow out of.

I don't know.

There is a lot that is known about autism & asperger's - but still so much is that is not understood.

Laura said...

jeneil, yeah such basic questions are unsettled by those that set the criteria.

Shari, Mislabeled Child is on its way, for better or worse. Ordered it on amazon on Friday.

goodfountain, it will be interesting to see how they resolve that little dilemna - the lifelong issue - won't it.

anything, sweetie said...

woah, that's a lot to chew off, but thankyou.

i'm interested in "caseness" and the life long diagnosis aspects, and yes, relating to the abyss.