about the Big Book o' Crazy once before, for ADHD Awareness Week. I wrote about how no one in in our house had ADHD that I knew of.
BAHAHAHAHAHAHAHAHA! Oh, my. Now I know differently, don't I? Sigh ... good times.
The new Diagnostic and Statistical Manual of Mental Disorders, version 5 (DSM-V) isn't due out until 2013, but that doesn't need to stop us from poking through their proposed revisions.
The proposed revisions to the autism diagnosis were revised this week, so I thought it might be helpful to take a look, and see how these criteria translate into real life with my son, who is currently diagnosed with Asperger Syndrome, a neurological disorder on the autism spectrum.
First, let's point out a couple things: The DSM is a manual of "Mental Disorders" and is produced by a group experts in the field of mental health, not the field of neurology. Autism is currently defined as a set of behaviors, as opposed to "etiology," or identified medical cause. (Translation: We don't know what the hell causes it, but, like porn, we know it when we see it.)
Why do I care how they define it? Partly because while I get that my anxiety and depression are mental disorders, I don't think my son's autism is a mental disorder. I believe, that in his case, it's a genetic condition. The other reason is that classifying it as a psychiatric disorder makes it entirely less likely that insurance companies are going to pay for services, as the lack of parity in mental health coverage in this country is obscene.
Another thing you might want to know: The DSM-V proposes Severity Levels of autism, based on how much support a person needs. I'm not sure how this is going to play out in real life, because the levels are "Requiring Support," "Requiring Substantial Support," and "Requiring Very Substantial Support."
What. The Hell. Is "Very Substantial"?
While the APA looks for a thesaurus, let's look some more at the actual proposed revisions, shall we?
The proposed revision eliminates Rett's Disorder completely. Not that Rett's no longer exists, it's just that it's got a medical cause, and therefor not a mental disorder. I hope that means that people with Rett's get more insurance support, not less.
The DSM-V folds autism, Asperger Syndrom, PDD-NOS (Pervasive Development Disorder - Not Otherwise Specified) and Childhood Disintegrative Disorder all under the umbrella of Autistic Disorder or Autism Spectrum Disorder. It removes speech delay as a must-have for diagnosis, but throws in sensory issues as a possibility.
Still with me? Here's the proposed criteria for Autism Spectrum Disorder, and how it applies in our case. The APA's criteria is in blue. My response is in black.
Autism Spectrum Disorder: Must meet criteria A, B, C, and D:
A. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all three 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,
So, what this means for us is that we had to teach Little Dude to show concern if someone is hurt. It was not an innate skill that he had. Now he knows to go give the person a hug. On the other hand, if he accidentally hurts someone, his response is over the top. He melts down, shuts down, and it takes forever to get him back from that place. So "abnormal" here could be read as "inability to regulate."
Little Dude does understand and use facial expressions, but often his expression is just blank. It's interesting, because people often ask me, "what's wrong?" when nothing is wrong: it's just that I'm not smiling. It makes me feel like people expect me to walk around grinning at nothing, just to reassure them that nothing is wrong. And that right there? Is one of my little specks of autism.
1. Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).
Little Dude flaps when he's happy or excited. Because he's super-happy on Fridays, we call it "Flappy Friday." I'm not exactly sure what "repetitive use of objects" means. Does it mean "hyperfocus on tiny Star Wars minifigures, turning them over and over while making little noises and holding your breath?" If so, then: check.
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).
Yeah, we've got these all covered. You might think, hey, don't all little kids pretty much eat the same thing every day? Yes, they do. However, most little kids don't go completely bonkers if they accidentally eat their sandwich sections in the wrong order.
Also, is motoric even a real word? I was an English major and I had to look it up. The medical definition is muscular movement. Thanks for keeping things clear, APA.
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).
You mean it's not normal for a four year old to live and breathe Lego Star Wars? Hmm. Okay then: check. But also, meh. It's normal for him, and he rocks at Lego Star Wars on the Wii. Some day he's going to be amazing at what he does, so this is another one of those autism traits that's a big fat win in my book.
This one is interesting to me because all four of my kids have had sensory issues. However, the girls all "outgrew" most of their sensory issues with the help of intensive occupational therapy. Little Dude has improved greatly in this area, but his sensory issues are still significant.
You know how you know your kid's sensory issues are a problem? When it impacts your entire family. If everyone in your family panics when you hear a baby cry in a store because you know it's going to set off a freak-out meltdown in your child, it's time for an evaluation.
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.
Yeah. This one's going to be a fine line, isn't it? Especially because as parents of spectrum-y kids, we find that we structure everything in our children's lives so that their stress is minimized. What you'll want to point out, and document if possible, is how these "symptoms," or differences, affect your child outside the home, and specifically at school. Because that's the crux of the matter, really, when it comes to getting your child the services that will make life a little less stressful for him or her.
I think the point is that there are a ton of spectrum-y people walking around, with bits and specks of autism, who are getting through the day. I know plenty of people that are somewhere on the spectrum, they just don't necessarily need intervention. The APA is looking to diagnose people who need support, after all, not just people who are quirky or socially awkward.
Then there's the Severity Levels. It's going to take a really experienced clinician to make these judgment calls, and we have a serious lack of experienced clinicians. That's why it takes up to a year to get an appointment with a autism specialist at the best children's hospitals.
I get that the goal here is to quantify things, and eliminate the vagueness of labels like "High-Functioning Autism," which isn't a real diagnosis. However, these levels seem a little arbitrary and subject to opinion, which makes me nervous. I don't know how these levels are going to affect the services kids get. If my son "graduates" from Level 2 to Level 1, does he lose occupational therapy? If he does well in Level 1, is he penalized by losing services?
You can see the original DSM-IV Criteria, the proposed revisions, rationale, and severity levels at the American Psychiatric Association's DSM-V Development website.