Defining the Spectrum (or... Swiss Cheese is Tasty)

Since we've already used the word "spectrum" and this blog is less than 24 hours old, I think a bit of definition might be in order.

Over the last 20 or so years, experts have come to describe autism as a spectrum of disorders rather than a single disorder.  This has been somewhat controversial, in part because it has coincided with a spike in the rate of autism, and there are those who think that the diagnosis has become too much of a catch-all.  In our household, we've taken a pragmatic view - it is easier to say "She has autism," when we get "the look" (which will likely be the topic of another post) than it is to say "She has Asperger's Syndrome," and then ultimately refer to autism anyway when we explain it.  

When Alexa was first officially diagnosed, the psychologist labeled her "High Functioning Autism" and the pediatric neurologist labeled her "Asperger's Syndrome."  So from early in our journey, we saw the distinctions as nuances along a continuum.  With that said, we don't advocate loosey-goosey use of the term.  We understand the spectrum to have a clear set of criterion, similar to the ones proposed for the upcoming Diagnostic and Statistical Manual of Psychiatric Disorders:

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 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.

What I really like about this definition is that it takes into account the individual differences in behavior by its use of "at least two" of four items, "ranging from...to" and such.  Additionally, the DSM-5 accounts for the variation in severity by including examples of how it can look at three different levels.  (For more on this, see the DSM-5 proposed revision.)  

The short version (if you've read this long) is that the spectrum refers not only to the people classically thought of as autistic (like the son in St. Elsewhere or Dustin Hoffman's character in Rainman) to those you might think of as awkward stick-in-the-muds (like Sheldon on Big Bang Theory). When I think of the spectrum, I use Swiss cheese as my analogy.   Some varieties have bigger holes than others; sometimes it's sliced and other times cubed; sometimes you can predict where the holes are and other times they surprise you; but Swiss cheese still has a distinctive flavor regardless of the variety.  People on the spectrum similarly share a distinctive set of traits, though not all are exactly alike.  Just like Swiss cheese, at the root of the autism spectrum are holes in skill development, some you can expect and some that take you by surprise. But I prefer to dwell on this - just like Swiss cheese has substance that many enjoy, there are solid areas of strength in persons on the spectrum - sometimes we just have to acquire that taste.