Autism: The New Draft Definition

There's a new proposed autism definition in town.

Here is the brand new draft/proposed definition of autism, as proposed for the upcoming Diagnostic and Statistical Manual, Version 5 (DSM-V), currently slated for publication in May 2013. The DSM in its most current version carries the official criteria for autism, the standards by which autism is to be diagnosed.

Proposed DSM-V criteria for Autism Spectrum Disorder (299.00)

Autism Spectrum Disorder

Must meet criteria 1, 2, and 3:

1. Clinically significant, persistent deficits in social communication and interactions, as manifest by all of the following:

   a. Marked deficits in nonverbal and verbal communication used for social interaction:

   b. Lack of social reciprocity;

   c. Failure to develop and maintain peer relationships appropriate to developmental level

2. Restricted, repetitive patterns of behavior, interests, and activities, as manifested by at least TWO of the following:

   a. Stereotyped motor or verbal behaviors, or unusual sensory behaviors

   b. Excessive adherence to routines and ritualized patterns of behavior

   c. Restricted, fixated interests

3. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

This is a substantial change from the previous definition, in a number of ways. At a very basic level, it's a lot shorter! The previous/current definition, which I have often referred to as a "combination platter" diagnosis, began like this:

"A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):"

I'm not going to quote the whole DSM-IV definition here, because it's pretty long. Roy Richard Grinker, author of Unstrange Minds (and originator of the term Elvis Sightings as related to autism, woo hoo!) has an excellent page on his web site listing all of the past DSM criteria. If you scroll to the bottom, you'll see the one from the DSM-IV, which will continue to be the official diagnostic criteria until the DSM-V actually comes out.

Another major change in the new draft is that it no longer recognizes separate categories for Asperger's and for PDD-NOS. I think this is the aspect of the change that will generate the most discussion, due to possible implications for identity (how people think of themselves) and services (in situations where currently a diagnosis of "autism" will get you services but a diagnosis of PDD-NOS won't.) Grinker has an op-ed in Tuesday's New York Times speaking to the identity question, and arguing on behalf of the greater clinical accuracy of folding the formerly-separate categories into the one spectrum.

Another new thing is that the DSM-IV definition specifies onset before age 3; the new draft specifies more generally that "symptoms must be present in early childhood."

One more aspect that leaps out at me, and I haven't seen discussed yet: I've always found it fascinating that sensory issues are so much a part of Joy's life, and so present in the way I hear both parents and people on the spectrum themselves talk about autism. But sensory issues were not so much as mentioned in the DSM-IV definition, and I've written before of Agency 1, the local intensive-services provider where we were told that they didn't "believe" in sensory integration.

Looky there, folks... it's right there in the new draft, item 2 part a!

I'm looking forward to hearing how the new draft will be dissected, analyzed, possibly changed? There will surely be a whole raft of consequences, both intended and unintended. One way or another, though, the DSM-V is coming and bringing a new framework for autism with it.

Ritardando

It's handbell concert season again, which means the schedule is crazy and my fingers are aching from holding two (and sometimes three!) bells in one hand simultaneously.

So perhaps it's natural that the bells should come to mind in relation to a cluster of posts last week, started by the incomparable Mama Mara, who posted a powerful reflection called Retarded Isn't Stupid, Mama Mara! Then came Cale over at Spectrum Siblings, who posted Retarded Isn't Stupid, Cale! And StatMama followed up with Developmental Disabilities, in which she pointed out that the word "retarded" quite literally means "slow".

And what's so bad about "slow"?

Slow is something we've actually been working very hard on with the bells. We've got a couple of pieces that that derive their beauty from a slow tempo -- like Gershwin's "Prelude No. 2" which Gershwin himself described as a "blues lullaby" but I think is actually a mighty seductive piece, not necessarily conducive to sleep! Another of the pieces, Brahms' Hungarian Dance #5, is chock full of tempo changes... and wouldn't you know, the big challenge is the slowing down (ritardando) in coordination!

Joy does not technically have a diagnosis of mental retardation, though in an earlier version of the DSM that would likely be the box that fit her best. (Diagnostic substitution. Powerful stuff when it comes to arguments about autism and "epidemic" language...) Right now we're calling it "developmental delays" or "cognitive issues" because we really don't know how to tease out what aspects of the delays are mediated by the autism, and what would be there if the autism weren't. Certainly her diagnosis of linear nevus sebaceous syndrome traditionally comes with a mental retardation component -- but not always. And we surely do have the sense that Joy isn't letting us in on everything that's going on in that mind of hers. In the words of her school district team leader: "Her file drawers are full! We just don't have the key to the cabinet."

But whatever word we use to describe Joy's trajectory so far... there's definitely a component of slow.

And why are people so down on "slow"?

I'd been plotting a post about the virtues of "slow" myself, and then I came across a wonderful column in this week's Mennonite Weekly Review, by Melodie Davis, called Slow is Good -- Very Good. It's gorgeous stuff, too good not to share. I'll intersperse her words with mine, OK?

Slow is a walk.

Slower still is a walk with a toddler.

Slow is a porch-swing and a long tall cool drink.

Slow is reading aloud.

Slow is a stew simmering all day in a crock pot.

Slow is incubating a baby for nine months.

Slow is hours of nursing, rocking, dozing with baby.

Slow is the food you started from seeds in the ground in the spring, weeded, watered, harvested, preserved, and didn't consume until the middle of winter.

Slow is melting into the arms of your spouse and just letting the moment linger, not worrying about what's next.

Slow is a delightful pace for what might come next as well.

Slow is focusing totally on the person talking to you during coffee hour at church and not thinking about the three other people you have to catch before they scurry away.

Slow is focusing totally on your child, giving yourself over to whatever activity they're playing, for as long as they care to keep it up.

Slow is meticulously hand-stitching every inch of heirloom wedding quilts for your grandchildren.

Slow is the sewing basket, and a pile of mending, and a classical CD on the stereo.

Scripture encourages us to be slow to speak and slow to become angry (James 1:19). God is slow to anger (Neh. 9:17).

Prov. 14:27 advises that “a patient man has great understanding, but a quick-tempered man displays folly.”

Moses complained that he was too “slow of speech” to undertake the task of speaking to Pharaoh and being a leader for the Hebrew people (Ex. 4:10). Yet look how God was able to use Moses.

Amen.

And, ritardando.

Joyful Autism

The inimitable Barbara at Therextras pointed me in the direction of a new (to me) blog last week, and I've been mulling over one of the posts I read there. The blog is Both Hands and a Flashlight, the blogger is Tim (who co-blogs with his wife Mary, sound like a familiar set-up?) and the post is "Happy Autism"?

Here's how it starts:

I recently ran across the term ‘happy autism’ in a book I was reading (which, of course, I’ve now forgotten the title of). Essentially, the author used this term to describe his autistic child, who clearly 1) met all three components of the so-called ‘autism triad’, and 2) was generally very happy and content most of the time.

That immediately rang a bell with me, and I do love bell-ringing! Joy doesn't generally fit the prevailing child-with-autism stereotype, an image that perhaps entails a blank-faced, unresponsive kiddo either rocking silently in a corner or engaging in disruptive, self-injurious behavior. Not that she doesn't get wrapped up in her stimmy activities, and we've had some effort to keep her safe from herself too at times! However, on the whole, she's a sunny child with an irresistable laugh, and we end up having to explain the shortcomings of the stereotype to people who wonder why she has the diagnosis she does.

There's actually something dangerously seductive about the term "happy autism" for me, as sweetly as it seems to fit my daughter. The trouble is the wish to find a way to differentiate her from those other kids with autism. You know, the stereotypical ones. See, she's not like them. She's happy. She's in a different part of the hierarchy, y'know?

Ugh.

Tim points to other modifiers that do something similar (high-functioning, mild, moderate, severe), even though they're not part of the official diagnostic criteria.

In our informal search to categorize and quantify, we end up creating new boxes, new artificial separations, each of which can bring its own damaging value-judgments.

I know that we need language in which to talk about diagnoses and conditions and experiences. I don't envy the team that's working on the new definition of autism for the upcoming edition of the Diagnostic & Statistical Manual (DSM V). The new definition will surely draw the formal boxes in a different manner than they are formally drawn now. I hope that they will get closer to getting it right. If we knew what right was.

Meanwhile, we're back to the tension between the myth of fingerprints (they're all the same!) and the n of 1 (every last one is unique). So I've got a new term for my original, broke-the-mold kiddo. It's all hers, uses her name even!

"Joy"ful autism.

(Seriously, if you haven't done so yet, go read Tim's post. He's good.)

Evolving Definitions

So, what IS autism, anyway?

Not a rhetorical question, that.

I suppose that on some philosophical level, there is a knowable "something" that is the quintessence of that which we call "autism."

Problem is, we haven't managed to catch up to it yet, either from a causality standpoint or a definitional standpoint.

When I first began to learn about autism, I took a line of thought that I think I've since outgrown... I hung my hat on the clinical, psychiatric definition of autism that formed the basis for Joy's diagnosis. That definition comes from the Diagnostic and Statistical Manual of Mental Disorders, published by the American Psychiatric Association. The most recent edition, the 4th edition, came out in 1994, and is known as the DSM-IV. I referenced in a previous post the peculiar combination-platter approach that checks off certain criteria in certain groupings to constitute an autism diagnosis:

A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3)

Uncle Schnirelmann obligingly contributed to the comments of that post a calculation of the number of potential combinations!

Here's the thing, though. This particular combination-platter that "is" autism has only been on the books since 1994. Autism was first added to the DSM in 1980; PDD-NOS (which broadens the autism spectrum considerably) was added in 1987; the autism definition expanded yet further in the current 1994 version, including the first mention of Asperger's.

Is autism in-and-of-itself really only the latest psychiatric definition? Did autism an sich (German for in-and-of-itself) actually change? Surely a reference book doesn't have quite that kind of power, right?

For anyone still hanging his or her hat on the clinical definition, hold on to the brim, because the world of psychiatrically-defined autism will be changing again, in not too many years.

The new DSM-V is due out in May 2012. The American Psychiatric Association started the wheels of the new edition turning as far back as 1999, in collaboration with the National Institute of Mental Health. There have been conferences and task forces, and starting in May 2008, 13 different work groups were convened to deal with different areas in the purview of the DSM. Autism is covered by the Neurodevelopmental Disorders Work Group, chaired by Susan Swedo, MD.

I didn't know all this off the top of my head, of course; got it from the American Psychiatric Association web site on the upcoming DSM-V. I started poking into this due to a blog post called Sausages and Legislation by afbh at Whose Planet Is It Anyway? The post references an LA Times piece from earlier this week, regarding a dispute between psychiatrists as to whether the process of assembling the DSM-V is going to be primarily a transparent process, or a closed-door process.

So that got me wondering, what exactly do we know about the status of the autism definition revision at this point? And that led me to this brief Report of the DSM-V Neurodevelopmental Disorders Work Group, dated November 2008.

The report lists three main areas of discussion for the work group:

1) Possible modification of ADHD criteria to allow for co-morbidity of autism and ADHD (currently excluded). The ADHD & Disruptive Behavior Disorders Work Group has agreed to consider this possibility.

2) Discussion of the validity of Rett’s disorder as a separate disorder and inclusion of a new modifier within the Autism Spectrum Disorders (ASD), which might include genetic and medical disorders and other biologically-definable conditions.

3) How to address Pervasive Developmental Disorders – Not Otherwise Specified (PDD-NOS). The individuals currently diagnosed with PDD-NOS may still be described in DSM-V, but the work group will discuss whether they can redefine ASD in such a way that the PDD-NOS diagnosis isn’t necessary, as this diagnosis currently captures a very heterogeneous group of individuals.

Then there are eight additional questions, and various subcommittees. I'm hoping this gets wider play in the autism blogs -- Kristina at Autism Vox has started that ball rolling. I'd like to see someone eventually take it in turn to invite discussions of each of the points and questions separately. (Not to worry. I won't inflict that on my particular readership!)

I will just comment a bit, though, on the one of the first three points that jumped out at me, and that's point #2, about the interface between autism and other genetic or biologically-definable conditions. The dual-diagnosis thing has been of particular interest to me, given Joy's combination of autism with linear nevus sebaceous syndrome. In our case, we've been conceptualizing Joy's autism as falling somehow under the LNSS umbrella. But I've also heard people referring to their quests to "rule out" autism by testing for genetic known-factors like Fragile X, and I've wondered why it couldn't be both -- especially since there's only one lone genetic exclusion in the DSM-IV, and that's Rett syndrome.

It's always seemed strange to me that Rett should be singled out, and at least mildly concerning that if the list of exclusions were to grow explicitly, it could have a massive impact on the eligibility for autism services of people who also have Down Syndrome, or Fragile X, or LNSS, or whatever. The work group report implies, though, that there's discussion about taking it in the other direction, maybe with explicit inclusions?

Fascinating stuff. I'm hoping that the official discussion stays as transparent as possible.