If you live with autism, you know that it almost has its own culture, its own language. Think of the many terms we – and others – use to describe our kids and their behavior. For example, if your child has a school-to-home communication notebook, you may find that sometimes it comes home with a report using descriptors that you feel don’t match those you use for your child. Even for children who are verbal, it’s important for parents to communicate effectively with the numerous people who interact with our kids on a daily basis.
When my daughter started school, I realized that many of the words I, and school staff, were using didn’t match up in terms of definition. For example, what they called “manic”, I called “restless.” Or what they called “aggressive” (which was of great concern to me) was really more “agitated” than anything (no aggressive or physical behavior at all). What I also found as an overarching theme was that, while my child’s good mood or happy states were easier for professionals to describe, her upset or emotional behaviors (such as “agitated” or “restless”) were much more challenging to explain accurately.
In addition to the importance of using the right words with school providers, I came to learn how crucial it is to use the correct terms when speaking to my child’s medication prescribers, medical providers, and behavior specialists. For example, if the medication provider is targeting a particular behavior, that provider and I need to have similar definitions of the target behavior. Thus, communication regarding progress or side effects can occur without misunderstanding.
The importance of communication even holds true for my husband and me as we “trade off” shifts with our daughter. He and I need to be on the same page regarding what types of behaviors have been present so that we can plan and make accommodations for her accordingly.
Remember that describing your child’s behavior so that someone else understands is more important than labeling it.
However, since we can’t always have face-to-face conversations, it’s wise to make sure you and others mean the same thing when using terms to describe what you’re observing.
One way to facilitate consistent understanding of terms is to make a “glossary” filled with words you use to describe your child and share it with your child’s “people.” As you create your glossary, be sure to tailor it to your child and to use lots of examples of the behavior you might observe for each one. Here are some examples of commonly used terms to describe behavior associated with autism:
Activated: often used to describe a side-effect of medication; examples include being increasingly alert, agitated, restless, may appear to be “driven by a motor,” may be increasingly verbal
Affect: demonstration by nonverbal behavior/expression of one’s internal state of emotion through external means (e.g., facial expressions, tone of voice, body language), such as “heightened affect” or “flat affect”
Aggressive: physical expression of emotional upset directed at others; examples include hitting, biting, kicking, pushing, throwing items
Agitated: emotional upset that typically follows (or precedes) a pattern of escalation; examples include pacing, loud vocalizations, crying, reacting to otherwise benign stimuli.
Anxious: overwhelming sense of uneasiness, worry, nervousness often in anticipation of something; behaviors include seeking excessive reassurance (but cannot be consoled), avoidance behaviors (such as refusal, stalling, shrinking back, diminished eye contact), seemingly unconscious motor behaviors (such as fidgeting, pacing, bouncing knee, drumming fingers, chewing on items, fingernails, or skin), engagement in self-soothing behaviors (e.g., thumb sucking, rocking, humming), may feel rapid heart beat, shallow breathing, “butterflies”
Compulsive: persistent impulse, behavior/actions that one engages in as if compelled or driven to do so, rather than wanting to do so; examples include waving a piece of string, lining up items, wringing hands, counting items (e.g., floor tiles as they walk), engaging in routines in specific order.
Disoriented: unable to indicate one’s name (person), where one is (place), or what day/month/year it is (time)
Disruptive Behavior: behavior that causes disturbance to others and/or to self; examples include throwing items, threatening to hurt self or others, blurting out, making loud noises, turning over desks/tables, hitting walls/desks
Distracted : unable to maintain attention/focus – shifting from one area of focus or topic to another; examples include being drawn to unimportant/irrelevant stimuli (e.g., noises in the hall), difficulty finishing a task, losing train of thought
Dysregulated: refers to mood upset when one is unable to regulate emotion and/or overcome with emotion; behaviors may include difficulty thinking clearly, physical or impulsive actions (e.g., hitting or pushing or limbs flailing), crying, loud voice, saying things not usually said (e.g., “I hate you!”)
Echolalic: parrot-like repeating or echoing of words or phrases heard previously, such as repeating lines from a movie or commercial , which can be immediate or later (delayed echolalia) Parent: “Do you want some juice?” Child: “You want some juice!” or Parent: “Go get your shoes.” Child: “Go get your shoes.”
Hyper/Hyperactive: unusually or abnormally active; examples include talking excessively, fidgeting with hands/feet, squirming in seat, having trouble staying seated, running or climbing excessively, difficulty engaging in quiet leisure activities, “on the go”, appearing to be “driven by a motor”
Impulsive: prone to sudden, spontaneous action, observed to “act without thinking”, appears impatient; observable behaviors include blurting out answers, interrupting, intruding on personal space, touching things, grabbing objects, not responsive to consequences
Irritable: easily annoyed and provoked to anger or frustration; may be observed to “make a mountain out of a molehill”; seeming to be “uncomfortable in one’s own skin”
Manic: demonstrating a highly elevated mood, disorganized behavior such as pressured speech/hyper-talkative, grandiose thinking/ideas, racing thoughts, distractible (attention drawn to irrelevant ideas), body fidgets/moves about, excessively seeks pleasurable activities, highly goal-directed
Mood: a pattern of one’s internal emotional state at any given time; examples include happy, depressed, angry
Non-compliant: uncooperative, unwilling or unable to comply when asked to do a task or participate in activities, non-responsive to demands placed upon the child; examples include refusing, stalling, or engaging in the opposite behavior when asked to complete a task
Perseverative: characterized by repetitive movement or speech or sticking to one idea or task that has a compulsive quality to it; for example, a child becomes focused on obtaining a specific object and, despite attempts to engage the child in another activity, the child continues to seek out the object (often to the point of extreme frustration)
Scripting: Using/overusing words or phrases heard elsewhere (rather than from original thoughts) in communication, such as quotes from books, movies, or a previous emotional event; can include pronoun errors (referring to self in second person); can include using the same intonation each time a phrase is spoken. Example – A child falls down and hurts himself. The parent says, “Are you okay?” The next time the child falls, he immediately says, “Are you okay?” Example – a child recognizes when a character is frustrated in a preferred movie and quotes the line when he feel s frustrated
Self-Injurious (SI): prone to inflicting physical harm to oneself, such as biting, pinching, hitting oneself
“Stimming” (v) or “Stim” (n): behaviors that are self-stimulatory/stimulate one’s senses. Some “stims” may serve a regulatory function (calming, increasing concentration, or shutting out an overwhelming sound), such as waving a string, talking to self, or humming.
In summary, as parents, we often are the voice for our kids. Honing your “autism vocabulary” will help facilitate better communication with the many people who are a necessary part of our lives. We hope this list has helped you get started; please see our previous blog on Describing Behavior for more information on this topic.