Musings on the DSM-V Revisions and "Severity"

I've been pondering the changes to the DSM-V definition of Pervasive Developmental Disorders proposed by the DSM-V Neurodevelopmental Disorders Workgroup and discussed yesterday by Dora in her post Collapsing the Spectrum--And Expanding it Again: DSM Considerations. Dora particularly noted the workgroup's third recommendation, namely:

3) Symptom severity for ASD could be defined along a continuum that includes normal traits, subclinical symptoms and three different severity levels for the disorder.

As Dora wrote, might not "separations of severity within [the] spectrum be variable and inconsistent?" The"level" of "severity" in an individual may very well vary "across an individual's life span, depending on age, available support, and a huge number of other possible factors." The workgroup's report provides "one possible model" for a "continuum" of "symptom severity for ASD." And, for what it's worth, I can see precisely where my son is according to this particular model.

Charlie would be "moderately severe ASD" as he has "some social communication but interactions noticeably disturbed" and "frequent and interfering rituals, repetitive behaviors and fixated interests."

He can talk some and does so to express his wants and (just this past weekend) what he's thinking, sometimes; he has a number of "interfering rituals, repetitive behaviors and fixated interests," and (especially when he's tired or frustrated or strung out) these become much more apparent. But his "preoccupation" with these is not "constant" and, with a lot of patient efforts, Charlie has learned to put aside those "rituals" and "behaviors."

What makes it especially hard for Charlie right now is that his main "problem behavior"---which doesn't occur frequently (not every day)---is a tough one. When he gets really anxious, is really tired, is really uncertain about what is going on, there's aggression towards himself (head-banging) and others. Due to his size (and it predicted early on that Charlie'd be tall, as he's been in the 90th and up percentile for height since he was a baby), it takes a lot more effort on our part, and on Charlie's, to get all that anxiety under control, and especially when things get physical. And, because Charlie is also in the throes of adolescence, and because he's not able to work out his energy and feelings doing something like organized team sports, all that energy and all those feelings will out some way.

But Charlie is not engaging in all these "challenging" behaviors (sorry for all the behavior-speak; we've been very wrapped up in it of late) constantly. One new difficulty is that he's gotten very upset at times and under circumstances when he had heretofore been at ease: For instance, twice last week at school, he got very upset very quickly while doing a conversational program that he's been working on for a long time.

Again. regarding the notion of "severity": Jim and I do think that, without years of teaching, years of trying constantly to learn how Charlie learns and communicates, Charlie might be considered "most severe." Other families have told us about siblings who, they say, Charlie reminds them of and who were placed in an institution by the time they were 7 or 8. Looking back, 7 and 8 were years that Charlie started to have a lot more trouble at school and at home: Some of this was because we had yet to find the right educational setting, and some, we think, due to his getting older, being able to do more than he had been, but still a lot less than other children his age. That process of maturing and wanting to be independent, but still having a lot of needs and limitations---this has occurred all over again for Charlie now that he's an adolescent.

All this "severity" talk has been clanging in my and Jim's thoughts as our school district again has been floating around talk of "temporary residential placement." It does seem a bit ironic that we, who Charlie lives with (uh, we are his parents), have not expressed a single wish for this sort of placement---we just keeping saying, Charlie's our son and he lives with us. (It should be so obvious.) We're not asking for him not to live with us (of course not!) and, ok, sometimes I know it's hard to see the extent of issues when you are living inside of them, but Jim and I know we like our life with Charlie. We've managed to figure out how to learn and change ourselves to accommodate for his needs at each step of the way so far. This has been extra challenging lately as Charlie is fast gaining on Jim in size and strength but we're a long long way (really, I don't think we'll ever get there) to say we can't handle things anymore. Some moments are so very challenging but we know that we made that promise to Charlie and we know that it's a promise we will keep.

Below is one proposed model for a "continuum" of "symptom severity for ASD" from the DSM-V Workgroup's report.