1. WHAT IS ASPERGER’S SYNDROME, ANYWAY?
Asperger’s. Autism. And the Umbrella.
Ok. So first thing first. What is ASPERGER’S SYNDROME?
Asperger’s is a personality profile of aptitudes and attitudes. Neither right nor wrong, it is simply who we are. But we know you may find us a little tough to understand sometimes. (That’s OK — we sometimes think you’re a bit confusing, too!)
A “syndrome,” by definition, is a constellation of tendencies or symptoms, not a disease or illness. So first and foremost, we believe that being Aspie is a phenotype, not a defect. That is, it is the multi-faceted expression – neither good nor bad – of a particular genetic sequence. Like red hair. It just is.
That said, a realistic picture of an Aspie might surprise many people: instead of “Sheldon Cooper” (from “The Big Bang Theory”), envision a Nobel Prize winner. A beauty queen. A poet. Even a Ghostbuster. Aspies all.
In “Re-Branding Aspie,” Jennifer wrote:
In general, “Aspie” describes bright folks who are a lot better with facts than with people; we have a very hard time understanding or anticipating others’ points of view, and therefore find great comfort in anything logical or precise. When the world seems big and unpredictable, it’s only natural to seek anything that will organize the chaos.
Aspies are, by definition, of average to above-average intelligence. In fact, it’s not uncommon for extremely gifted children (especially girls) to be hugely under-diagnosed, simply by chalking particular behaviors up to being “really smart.” Being “really smart” does not make someone hold fast to rules or routines, become overwhelmingly absorbed with a particular topic, be rigid in thought or behavior patterns and generally a bit immature socially. It just makes them smart. Asperger’s accounts for the other stuff.
You’ll see our “Aspie-ness” in interactions with other kids (sounding like “little professors,” being bossy, the “playground policeman,” or just retreating if it’s all too hard); often they’ll do better with children who are younger (more controllable) or older (take the Asperkid under-wing), or with adults who find the “mini-grown-up” entertaining. Asperkids usually have a “special interest,” which can be all-encompassing and provides a mental respite from the confusing nuances of social situations. Also common are sensory sensitivities (to noises, crowds, textures) and attention troubles.
By nature, Asperkids tend to get a bit fixated on part of a thing, an idea or a situation rather than grasping the whole shebang (psychologists call this missing the “gestalt”). Jennifer says that it’s like seeing only the mashed potatoes, but not noticing the entire Thanksgiving meal. We also call it “getting right to the toenail of the matter” or missing the big picture.
2. OK, WELL…HOW IS ASPERGER’S DIFFERENT FROM AUTISM?
3. But – is “Asperger’s” even a “label” anymore?
An Asperger’s Syndrome identification means that one is part of the larger autism spectrum (as did diagnoses of Pervasive Developmental Delay- Not Otherwise Specified, “PDD-NOS,” and “classically autistic“). But since May 2014 (and the publication of the new DSM, or diagnostic manual used by many docs/psychologists), the terms “Asperger’s Syndrome,” “PDD-NOS,” etc. are no longer diagnoses unto themselves. Now, a larger, umbrella Autism Spectrum or Autism Spectrum Disorder (AS or ASD) diagnosis is given without further breakdown or divisions.
Some people really identify with the word “Asperger’s” because it explains the particular “flavor” of autism without having to further say “high” versus “low functioning.” Others don’t care and feel that the larger “umbrella” term “autism” is more unifying, that “hierarchies” are damaging to a community which does all share “the same ingredients…expressed in different intensities.” Honestly, I see both sides clearly. And as to how the changes in naming will pan out, only time will tell.
4. What’s all this I hear about “sensory” issues?
Sensory Processing Disorder (SPD or sometimes Sensory Integration Disorder/SID) is commonly the first “stop” toward an eventual AS diagnosis. “Making Sense of the Sensory Stuff” and “Stimming” will give you EVERYTHING (in really clear terms) you need to know about understanding “sensory mumbo jumbo.” But suffice to say, sensory seeking/avoiding behaviors are documented by teachers, family, or an Occupational Therapist long before a psychologist is ever involved to consider AS. (After all – mom and dad can’t help but see the trouble sleeping, inappropriate-for-weather clothing, climbing on people/overtouching – or avoiding touch, hair washing/nail clipping terror, crashing, touching, spinning, clothing “tag” issues, prolonged thumb sucking, covering ears, avoiding crowds, etc.)
5. SPD, OCD, ADHD — I’m lost in Alphabet Soup! Help!
A person can have a SPD (or OCD or ADD, etc.) without having the other qualifying characteristics needed to be “on the spectrum.” That is to say, sensory dysregulation is one of the “check off list items” required to achieve the AS diagnosis. But it’s ONLY one.
To “build up to” a complete ASD diagnosis, one needs other “qualifying characteristics” including, but not limited to, sensory sensitivities. For example? Well, to those of us who live with and love Asperkids, it can be very hard to – on cue –be able to articulate why our obviously brilliant children are NOT just “anxious and highly gifted.”
In other words…..ALL of those with AS have (varying in intensity from person to person and day to day) some degree of SPD. And Anxiety. And OCD. And ADD/ADHD.BUT. NOT ALL of those with SPD or Anxiety or OCD or ADD/ADHD have AS.Do you see the common word here? “DISORDER.” In other words, we’ve accumulated a litany of everything WRONG -BAD-DEFECTIVE-MUST BE FIXED.