Jan
20
BEFORE YOU READ ANYTHING ELSE:
Dr. Lord said that the study numbers are probably exaggerated because the research team relied on old data, collected by doctors who were not aware of what kinds of behaviors the proposed definition requires. “It’s not that the behaviors didn’t exist, but that they weren’t even asking about them — they wouldn’t show up at all in the data,” Dr. Lord said.
Last paragraph from the article below
***WARNING: LONG POST IS LONG. IF IT’S TL;DR, I UNDERSTAND. THE ABOVE IS THE MOST RELEVANT PART.***
Yesterday’s NYTimes article is definitely not the worst propaganda to come out about how we’re either overdiagnosing, or how DSM-V will kill kittens, or how it’s all about the money, but it seems to have created the largest response I’ve seen yet.
I want to paint you some pretty pictures to illustrate why Volkmar’s “data” from his “study” (link not to the “study,” but where it’s referred to as a study)that no one has read nor has it been published nor is it going to be published.
(SOPA and PIPA supporters: I do not have permission to reproduce this photo so I’ve kept the link to where I got it rather than putting it on my own server.)
Hey look! We have some apples.
Red Delicious (Autism), Granny Smiths (Asperger’s), Yellow Apples (PDD-NOS), and Others (Rett’s and CDD)
Data:
Red Delicious Apples are: Red, Have a Peel, Have a stem, Has several seeds at core.
Granny Smith Apples are: Green, Have a Peel, Have a stem.
Yellow Apples are: Red and Yellow, Have a Peel, Have a stem.
(I can’t tell you data used has not been released.)
Diagnostic criteria match the above.
Diagnostic criteria change.
To be an apple:
- You must have a peel and a stem. (You have to have communication challenges.)
- You must have seeds. (You must have social challenges.)
- You can either be tart, sweet, or somewhere in the middle. (You may have restrictive behaviors, interests or activities.)
Oh dear. It seems that Granny Smith Apples and Yellow Apples no longer meet the criteria to be called apples.
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I can’t confirm this as stated above because the data and the way it was utilized has not and will not be shown. Volkmar has said he will be doing a large sample later in the year, but that will result in different results because it’s not the same data points.
But let’s look at the discoveries made about Autism Spectrum Disorders in the past 2 decades (19 yrs to be honest). Heck, let’s look over the past decade. Did you know we can see signs of Autism sometimes as early as a year and a half? 10 yrs ago, most children weren’t diagnosed until 3-6 yrs old unless they showed multiple traits. At that point, we didn’t see traits in children diagnosed with AS until anywhere from 6-18+. Now I know parents who have had their kids diagnosed with AS at age 2-4! Why? Because we know even more about Autism, how it presents, and numerous traits that were considered “fringe” 20 yrs ago (Sensory integration, anyone?).
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Does that mean there aren’t things wrong with DSM-V? I don’t know. I like what it has become. I agree with multiple people that it doesn’t show all of our traits, but I don’t think that kills the criteria. Have you seen the criteria, btw? That was a lot of the big scare yesterday.. Apparently a lot of people were trying to access the DSM-V page because it took me over half an hour to even get to the home page, let alone the ASD page. Take the currently listed criteria:
A. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:
1. Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,
2. Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.
3. Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and in making friends to an apparent absence of interest in people
B. Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following:
1. Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).
2. Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).
3. Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
4. Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).
C. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)
D. Symptoms together limit and impair everyday functioning.
I can see some people complaining about D, but don’t really care about that as I do believe that ASDs are disabilities. I know some people are worried about going back to the late diagnosis that A will lead to, which I think is more than appropriate. I know adults are worried that because of their ability to mask means they can’t get a diagnosis, but that’s not really a *new* problem.
Like I said on a list today:
It’s no different than teaching an Autistic child to mask. Does that
mean they’ve lost their diagnosis? (I know, that’s a question most
parents will argue.) The only difference is that I wasn’t taught by a
behaviorist, OT, SLP or other professionals.
Except, when it’s taught by professionals, it’s usually called “coping strategies” or “intervention.” But as said, this is a current problem.. And I think it has to do more with professionals not understanding adults can learn coping skills and sometimes there is not going to be any data to prove that they originally didn’t have those skills. These are what I call BAD PROFESSIONALS. Of COURSE an adult doesn’t present like a child, because, they aren’t a child!
Basically, THE SCARE IS OVER NOTHING. The release sent out by GRASP even shows how it’s important to look at ALL the details. (Ya know, like that the current criteria listed was listed January 26, 2011… and we’re currently in 2012… and we haven’t even hit January 26 yet.) I know not all the details are available, but I think that’s due to the fact that Volkmar is INTENTIONALLY using scare tactics. It’s not like his views on the subject of removing Asperger’s aren’t clear.
As a mother with AS, a child with mild autism and one profoundly autistic I agree,wholly. I have mixed feelings about the DSM change, but I think all the current drama about AS not being a stand alone dx is over nothing. Thanks for a well written article.
Thank you for this article, Melody. I admit to being sucked in by a lot of the hype, but you make a lot of good points and I can’t say I disagree now. Thank you!
So many excellent and to the point posts, Melody. I think you are one of my personal heroes right now. (Not in the “inspiring”, idealistic, distancing way but in the motivating, awesome work, and achieving something I want to do someday way?)
The number of people who actually believe the article is both astounding and disheartening. Yes, we will still have to deal with the professionals who don’t interpret the criteria as broadly as intended. But again, NOT A NEW PROBLEM. Just. UGH.
Additionally, GRASP clinging on to this is no suprise at all- they’ve been very anti-DSMV ever since it was announced that Asperger’s would be folded under the ASD dx. They- for whatever reasons, which I’ve debated the culture of with the founder of GRASP before- have a stake in keeping Asperger’s separate from ASD. Additionally, it feeds into the cultural elements that make people with other ASD Dxs or who have further care needs feel uncomfortable at some GRASP groups. (Note: not all GRASP chapters have this issue, but a sizable enough number do.)
[...] Reading. Melody Latimer uses apples as an instructive (and funny) analogy to explain the problem in DSM-V Under Attack, and Michael Forbes Wilcox points out that autism is a neurological condition, not essentially a [...]
Always love those that claim the ID are not included… what part of “ACCORDING TO THEIR DEVELOPMENTAL LEVEL” means they have to have an IQ score that is age appropriate to qualify for the dx?? Also, at the end it says “may not manifest until….” which will catch those that are older when the impairments become an issue.
My eldest (12) will lose his.
My youngest (10) hits them all.
I’m one that won’t miss the adult aspies and the “way of being” crowd. Autism is a DISABILITY. I’m hoping the new dx stays just as it is. My family Dr told me about a year ago “the DSM IV allows you to dx anyone with anything”…. If you truly believe people are “different” and simply part of the “norm”, we shouldn’t require dx’s so we can “belong”… should we??
D bothers me because while I agree that ASDs CAN be disabling, in my case it isn’t. I don’t have significant day-to-day issues (Cripes, I wasn’t diagnosed until I was 24), but that doesn’t mean I have no challenges. I agree with farmwifetwo’s point in her final sentence, but we’re not remotely there yet. In the meantime, I think that keeping the less-severely affected in the diagnosis is helpful, both with finding outside acceptance and on the psychological well-being of people affected. Getting diagnosed led to me feeling normal and not-broken for the first time in my life.
I appreciate your points, but the issues are more extensive. The new criteria as currently written have some merits, but they are narrow, child-oriented and subjective. They need more work. Regardless of volkmar’s motives ( which are speculative), we urgently need more research on the likely impact of these changes, which currently threaten to undiagnose many Aspies and adults who benefit from the dx and associated supports. Two members of the DSM committee have indicated that a narrowing of the definition is a goal of this process, and there is evidence of political and financial pressure to bring that about.
The organization I’m involved with has overwhelming experience and evidence of the importance of the aspergers label in people’s lives. There is no good reason I can see that the DSM should not retain it as a shorthand descriptor for this portion of a very wide and confusing spectrum (and if other labels can effectively serve other sub-types, good). Before the ASpergers dx was introduced, people with the condition were given various filler diagnoses (schizophrenia, bipolar, OCD etc) which were no more helpful than were the info and services designed for classic autism. The AS label is a gateway to tailored info and strategies that help individuals, families, clinicians and educators. It provides identity and access to a community that has a transformational effect on many lives.
I’m concerned that a commentator above suggests this is only about some practitioners “not interpreting the criteria as broadly as they are intended.” how can anyone know what is intended, beyond what the committee puts in writing? The criteria are what will be used to determine dx.
Place holder for my response in the morning.
Nice analogy … but things are never quite as simple as they seem.
Here’s the kicker – Granny smith seeds are not viable seeds alone to reproduce another
Granny Smith …
You will not get a Granny Smith apple from a Granny Smith seed …
SO … define seed …
Definitions matter … and so do the policies that will be derived from them