Forget the vaccine-misogyny thing! They're about to take away my baby's label!
The New York Times reports that the proposed DSM-V (shudder. deep breath. sigh.) will roll Asperger's into autism spectrum disorder, period, and render the diagnosis of "Asperger's" obsolete.
Nooooooo!
I'm kidding. TH is going to be excited as all get out when I tell him that the dreaded "ass burgers," as he spells it and thinks it's said, may vanish from the lexicon. Temple Grandin, it seems, would like to see it stay.
From my perspective, it doesn't change much, and I think it's a good idea to stop trying to parse arbitrary divisions. People tend to latch onto these and "accuse" Aspies in particular of not being "real" autistics. TH is autistic. Born that way. Seems headed to stay that way. As one strugging DSM-V-er describes it in the piece, the committee intends to define autism based on core elements common to all types: impaired social communication and repetitive behaviors or fixated interests. She goes on to say that in autism "everybody is a snowflake," and praises the analogy as "perfect."
We love our little snowflake (really, he's quite pale), impaired social communication, repetitive behaviors, fixated interests, and all. When he refers to himself, it's sometimes as "autistic," but most often, it's "just a kid." And that's what really matters, regardless of what the DSM-V decides to call him.
18 comments:
Let me first say that I'm not a clinician, at all. I just have to teach it now and then.
I think that this is a really good idea. There seems to have been a move since the DSM-IV-TR to reduce the number of independent labels in an attempt to focus both diagnosis and treatment on families of disorders. I imagine the ass burgers will remain as a sub-classification of ASD, even if the name goes away (similar to how psychopathy and sociopathy are all under the APD umbrella of happiness now).
For a child to refer to himself as "autistic" makes me cringe. My eldest the one who started at Mild PDD (2.5yrs and non-verbal) and is now mild NLD, doesn't even know he has a dx and he's 10, he'll have to be told at the next psychometry exam in Gr 8. He knows something's up b/c he has supports and he uses a computer more... but for him that's just how it is.
A year ago waiting for the airport shuttle to take me away to a friend's, Mom and I were talking about his bro and from the backseat comes "I'm not autistic, R is". My response "You're not".
People are not diagnosis', people are people. To use one as a crutch, an excuse, not as a means to get services is inexcusable. It's not some cutsie club. We've worked very hard at teaching social and behavioural skills to our son's to where most people don't notice anything is different with the elder until they are told and they listen closely to his speech patterns.
I do hope they make the qualifications less flexible. As my Dr and Ped say "Anyone can be dx'd with anything under the DSM-IV". Even if it officially pulls the elder off the spectrum, IMO it will protect the younger from those who self-dx and claim to have autism. We have our LD dx through language and psychometry testing.. we'll keep our supports.
Since my son's dx is pdd-nos, I can't help but wonder what this is going to mean in terms of the school district and the services they provide. I think the changes make a lot of sense, but wonder if parents will now be forced to have their kids re-evaluated--will some districts see this as an opening to weed out? Or will they grandfather in the kids who have aspergers or pdd? I worry about that.
I think the problem with defining it by its core elements is that it's going to leave some people out - namely girls - who could and do benefit from the speech therapy groups and such for the social piece.
What I read about girls with Asperger's is that their fixated interests look more "typical" than boys. And, in Charlotte's case, if indeed her interests do cross the line into "fixated" - it's things like weddings and princesses. And I'm not sure they are "fixated" as I'm just not sure how one quantifies that.
Also, Charlotte doesn't have repetitive behaviors like lining up toys, hand flapping, rocking - nothing.
But she does have impaired social communication. And she has benefited greatly from speech therapy and social groups.
So ... if she didn't qualify for a Dx based on the new definition, does that mean she'd be left in the dust in terms of the social piece.
I should really write a post about this. Maybe.
Jordan...don't know...sounds like they're planning to efface any subclassifications entirely and roll everyone into a single diagnostic category. I'd be glad to see catchalls like "NOS" go and just have these folks fall into the general category. NOS is so...irritatingly nonspecific, and I don't mean that just for autism diagnoses.
FW2...what can I say? Thanks for posting.
Kristenspina...from the way the article reads, the intention is to bring PDD-NOS and Asperger's into the "autism disorders" fold without divisions. It commented--and it's true--that in some states, these two dx's don't get children services. TH is actually dx'd autism, so he does receive services here. But I can see the concern that some schools would try to use this new classification as a way to exclude--whether they can will depend on the actual language the DSM uses. Nevertheless, I think the real intent on the part of the DSM-V committee is inclusion from the diagnostic perspective, rather than exclusion, and I hope the language clearly reflects that. It may be that this turns out to open the door to services for people with current Asperger's or PDD-NOS dx's who are excluded right now.
goodfountain...I don't know how much they'll elaborate on those core elements, but one thing to note is that it doesn't say "unusual." Just says, "fixed," which is a change. And it says OR, not AND, for repetitive behaviors and fixed interests, as in one or the other, not necessarily both. The literature is woefully sparse for autistic girls, which means that the DSM-V will be, too, I'd guess, which means that as usual, by the time it comes out, it will be behind what people have come to understand from the real world and newer research. As the mother of a girl on the spectrum, you've probably got some elements of a struggle simply because no one has focused on females as much as they do males...in any field of biomedical sciences. In fact, all women have to be aware of this struggle and argue for sex-focused research on their behalves. That doesn't help you now, I know, regarding your daughter. It may be that for a few years, existing dx's simply don't change to conform to the new DSM. Not sure how individual districts will choose to handle that.
Its been trending this way for ages, the inclusion of Asperger's as a seperate disorder was an abberation effectively the product of the lobbying by the Yale contingent of Klin and Volkmar who initially wanted to push it in the direction of Non verbal learning disability.
Politics all along and academic rivalry's
Poor old Hans indeed, because it is rumoured that Kanners predominance in the early years was bought at his expence, and Kanner was not the innocent he appeared, being well aware of(as a fellow Austrian in exile and borrowing heavily from his compatriots work.
The change makes sense because research can't really distinguish between Asperger's and autism. Diagnostic tools can't really distinguish them either. A number of papers go as far as saying that DSM-IV Asperger's is undiagnosable in children.
As a practical matter, it could be problematic for some people, I'm sure. What if you have documentation that says you have Asperger Syndrome, and you rely on that documentation? Do you have to get re-evaluated?
@author...never anything without politics, is there.
@Joseph--Agreed. Minus the language aspect (he was on target with expression but pragmatics, not so much), TH fits current criteria for Asperger's and autism.
As for the question of re-evaluation, common sense would dictate that if they do roll Asperger's and PDD-NOS into an autism umbrella dx, people with those existing dx's would just roll into that. Of course, common sense's dictates often go unheeded.
I'm torn. On one hand, I think it is a good idea to fold everyone in under one name to put an end to the fracturing. It feels like this acknowledges the fact that while my son is academically advanced and verbal, he still has significant impairments that need to be accommodated, vs relegating him to a 'cutsie club.'
On the other hand, when talking to people familiar with the spectrum, such as the adaptive sports program, it is very easy to tell them G has Aspergers and then only have to explain his specific triggers. With the label being so broad, more detailed explanations would be required. Also, we've collected a bunch of Asperger's books for kids to help G understand his differences. With a more general Autism Disorder label, we'd have to pick what parts apply and discard others. I'm wondering if this would make it harder for G to understand and identify with others. Perhaps these are petty concerns, but they were the first thoughts that came to mind after reading the article.
@lynnes--not petty at all. Our personal orbits are what matter to us most, as it should be. You raise good questions. My guess is that "Asperger's" will remain a byword of sorts to communicate certain things, even if it disappears from the official diagnostic manual. On the other hand, I think we all pick the parts that apply and discard the others for each of our unique "snowflakes." I know that TH, for example, does not have "meltdowns." His reactions are more "meltaways," as in...he just effaces himself out of any situation that's freaking him out.
As for the books...I assume that with a reconstructed diagnostic manual, there will be reconstructed books. But also...so many of those books have "case" stories that I think any child on the spectrum who can read them or have them read to them might appreciate. There will be much to identify with in those, regardless of what they call it.
labels are for filing cabinets. I have always thought that segregation of autism and autism lite was a little arbitrary to say the least as the anxiety and "desire to fit in" of Aspies can make it just as stressful as the "don't give a feck just do your thang" full on autie.
And when our new web developer asked me if we should do a duplicate site but house behind a door marked "Aspergers" I said Nooooooo! and she agreed with me.
All Autistics are equal. Full Stop
@lisadom: I agree that labels as a way of defining a whole person are pointless. But for people who really like file cabinets (such as education bureaucrats or really bureaucrats of any stripe or healthcare workers having to triage or decide where the line is for therapies or interventions), labels are useful. We have "used" TH's label to convince the school system that he needs the services he receives. Without that label, he'd not get these. That said, he doesn't walk around with a sticker on that reads "Autistic."
You are absolutely right, in my opinion, that the segregation is arbitrary. Our son is clearly one diagnostic category at one moment and clearly a different current category in another moment. And the current criteria don't address realities; for example, "on-time" language use doesn't address whether or not that language use is pragmatic. TH had words "on time," but he didn't know how to use them. So, I lean strongly toward an umbrella diagnosis that allows flexibility to identify and help the autistic person, rather than arbitrary theoretical divisions.
Given the time lag between any change and actual practice, given that there are a vast number of practising psychiatrists who have no idea how to diagnose anything on the spectrum, given that France is still in the Bettleheim era, you won't expect total change for some time, notwithstanding Asperger's has soemwhat fallen out of use in favour of ASC for some time over here.
DSM does not have the same validity here because we have a different system which does not rely on those insurance codes.
At the end of the day it is my GP who rubber stamps the diagnosis when I need proof of it, guess I will have to persuade her that Asperger's is no longer la mode.
The reality in the midst of all this is that autism is not monolithic neither does it subdivide into the existing subtypes, being a multidimensional phenomena there are a great number of possible permutations, that is pure logic and mathematics.
The irony is that Lorna Wing could tell you that, she popularised Asperger's work but never intended it as a diagnosis in it's own right.
She has never diagnosed according to DSM IV.
The question is what does it mean for me?
As an individual with a diagnosis, or as a researcher.
It means nothing as a researcher because I have to look at the validity of autism as a seperate and seperable nosology and justify that in any case.
I, too, vote for simplifying it to one big spectrum. People just don't understand the current criteria. I'm always describing our guy to teachers and having them say "That sounds more like Asperger's to me." That is because they think Asperger's means high-functioning and Autism means low-functioning. The sooner that misconception is removed, the better for everyone involved.
@VAB...excellent point.
She goes on to say that in autism "everybody is a snowflake," and praises the analogy as "perfect."
Perhaps she was just thinking of Wilson "Snowflake" Bentley.
Joe
Labels are necessary though for treatment and for aide. How can they be avoided. My daughter knows she is Autistic and she has no shame when she describes her diagnosis or her needs. I feel it is her right to know and she needs to learn to advocate for herself.
I don't think it is awful that Aspergers term may go by the way side. But, I do think it is going to further confuse people who don't understand the vast differences among people and children with Autism. And at the same time my daughter is all over the "spectrum". Another term that makes many people cringe. But, when I have tried to explain to people about her diagnosis they at least understand that term and how a child like M may bounce around the spectrum between abilities.
As someone who's had various labels applied to my particular flavor of neurology over the years, I think I had it when I told one disability services person, "I don't really give a darn what you CALL it, just help me HANDLE it so I can hold onto a decent job for more than 5 minutes!" Like I said, call it ADHD, call it NLD, call it Asperger's, or call it whatever, that's totally beside the point. I think she got that clearly; I've now had the same "real" job for nearly 2 years thanks to their persistence and insight. (All of those labels have been tossed at me at some point, actually. I think they finally decided I just have "weird" neurology thanks to a tangle with neonatal hydrocephalus and it has elements of all of those diagnoses.)
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