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DSM-V: Severity on the Autism Spectrum

  • Posted on January 31, 2011 at 2:04 AM

Sullivan at Left Brain, Right Brain just posted the proposed DSM-V criteria for autism.

It states:

Severity Level for ASD

Level 3 ‘Requiring very substantial support’

Social Communication

Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning; very limited initiation of social interactions and minimal response to social overtures from others.

Restricted interests & repetitive behaviors

Preoccupations, fixated rituals and/or repetitive behaviors markedly interfere with functioning in all spheres. Marked distress when rituals or routines are interrupted; very difficult to redirect from fixated interest or returns to it quickly.

Level 2 ‘Requiring substantial support’

Social Communication

Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions and reduced or abnormal response to social overtures from others.

Restricted interests & repetitive behaviors

RRBs and/or preoccupations or fixated interests appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress or frustration is apparent when RRB’s are interrupted; difficult to redirect from fixated interest.

Level 1 ‘Requiring support’

Social Communication

Without supports in place, deficits in social communication cause noticeable impairments. Has difficulty initiating social interactions and demonstrates clear examples of atypical or unsuccessful responses to social overtures of others. May appear to have decreased interest in social interactions.

Restricted interests & repetitive behaviors

Rituals and repetitive behaviors (RRB’s) cause significant interference with functioning in one or more contexts. Resists attempts by others to interrupt RRB’s or to be redirected from fixated interest.

So, if these proposed criteria are not further revised, then I can say I have a child on each level of the autism spectrum disorder as defined by the DSM-V.  I’m actually kind of pleased.  See, up until now it’s been “high functioning” or “low functioning.”  Yet, I have one child who is “high functioning,” one child who is “low functioning” and one child who is definitely in-between.  These new labels actually account for that.  So, yeah, I prefer that.

Which is not to say I approve of the medicalization of autism.  I don’t really like that, but I am also somewhat resigned to this being the state of our world today.  Maybe we’ll find a better way—at least, I hope we find a better way!—to account for differences that require accommodation other than describing them solely in the terms of deficits and dysfunction.

In the meantime, I’d like to share why I believe each of the boys fit in the categories I would place them in and see what y’all think.

Willy: Level 1 “Requiring Support”

Willy attends school in a mainstreamed environment and he progresses nicely in this environment, but he does so because he receives twice-daily coaching, speech and occupational therapy, and other modifications, including breaks, picture schedules and social stories.

He is twelve years old, which is technically the age at which a child is legally able to stay home alone for less than a full day.  Willy lacks the skills necessary to stay home alone safely.

Willy is doing very well, especially considering the doctor who originally diagnosed him recommended institutionalization.  However, he needs support to succeed as well as he does.

Alex: Level 3 “Requiring very substantial support”

Alex is baffling.  Alex’s needs considerable support, both as a non-verbal child and as a sensory-seeking/sensory-avoiding child.  Yes, he both seeks sensory stimuli in dramatic ways and avoids other stimuli in dramatic ways.  His behaviors may be co-morbid, but nobody is willing to say for sure.  The therapists, doctors, and other professionals are somewhat stumped by his complex array of needs and behaviors.  The modifications, accommodations, and supports we have established for Alex are not effective, at least they are not enough, and nobody seems to have a clear idea what we can add that would work.

Alex requires support for just about every facet of his life and that’s probably not going to change any time soon.  Alex wants to be more independent—he has the drive and the spirit of independence—but he is not able to succeed independently of the very substantial supports he receives, and even with those supports his success is sketchy at best.

Ben: Level 2 “Requiring substantial support”

Ben is not Alex, but he’s not Willy either.  He’s in-between.  He struggles with many of the same behavioral issues Alex does, but to a much less severe degree.  He’s not non-verbal, but he lacks Willy’s ability to communicate effectively all or even most of the time.  The modifications, accommodations and supports we have in place for Ben are mostly effective and frequently adequate.  Like Willy, there are times when his needs surpass our preparations, but those are not daily occurrences, as they are for Alex.

Ben requires support for many facet of his daily life, but he is much more independent—as per ability, not in spirit—than Alex is.

And, so, while I have issues with the proposed criteria and the idea of this whole thing, I also think this is something of an improvement.  Not enough, but it’s forward motion.