Autism Terms You May Be Misunderstanding

If you think it's tough to make sense of your loved one's autism, you're right. Of course, autism is a complex disorder, but that's only half the problem. The other half is created by well-meaning professionals who carefully clothe their statements about people's loved ones in terms that can (and do!) mislead family members about their autistic loved one's level of challenges and abilities.

Commonly Misunderstood Terms About Autism

Why would a professional intentionally confuse a parent, guardian, or caregiver? In most cases, they're not actively trying to be confusing. They're simply couching their diagnoses, descriptions, and recommendations in terms that they think will be gentler or, perhaps, more politically correct. The outcome, however, is that many can wind up misunderstanding their loved one's situation. Here's what these terms really mean.

Developmental Delay Is Usually Synonymous with Developmental Disability

You've probably heard the term "delay" many times when discussing a family member's autism. Usually, it's included in a statement such as "your child has a developmental delay." 

We all know what a "delay" is. We've all had delays in our lives. Checks, trains, airplanes, and dinner are often delayed. And then, if we wait and take appropriate action, they arrive. And we think "better late than never."

But the term "delay," when used to describe someone with autism, doesn't necessarily imply an ability that is late in developing. More often, it refers to an ability that will never develop, or may not develop fully.

Children with autism may, in fact, develop skills as they mature—but autism is a lifelong disorder, which involves a range of differences and challenges that don't go away. If the child in your care does develop skills and abilities it's not because they have naturally "caught up," but because hard work and therapies have had a positive impact.

What's wrong with believing that a child will "catch up" and become, in autism lingo, "indistinguishable from their neurotypical peers?" In some cases, parents or caregivers assume that a child needs nothing but time in order to "catch up". This, of course, is not the case: early and intensive therapy is critical for a youngster with autism. Even with such services, autistic children will almost certainly continue to be autistic for a lifetime.

One Word Can Mean A Lot of Things

It feels great to hear that an autistic child is "exceptional." Until you understand what's really meant by the term.

99 percent of the time, the term "exceptional" means "better than average" or "terrific." But when it's used to describe children with autism, it means something completely different. Exceptionality, in the case of children with disabilities, may mean something closer to "unlike other children because of their challenges and disabilities." This is not always true as it is possible for some children with disabilities to have unique talents.

It's very easy when told your child is "exceptional," to walk around in a warm glow of pride. It is important to ensure there is clarity about what caregivers, parents, guardians, therapists, and teachers mean by "exceptional". This will help avoid misunderstandings and problems with your loved one's services and outcomes.

Cognitive Challenge Means the Same Thing as "Low IQ"

Back a few decades ago, "moron" and "idiot" were technical terms describing specific levels of intelligence as measured by an IQ test. Because the terms were so hurtful and pejorative, they were changed to the more general term "mentally retarded." Just a few years ago, "mentally retarded" was retired, for very much the same reasons.

Today, instead of referring to a child as having "low intelligence," professionals will often describe a child as being "cognitively delayed" or "intellectually disabled."

What do these terms mean? Any parent or guardian could be forgiven for thinking they mean "delayed, but likely to catch up soon." Some folks think they refer to challenging behavior (also known as misbehavior). But no. Just as before, they mean "performs poorly on an IQ test." Of course, not all IQ tests are appropriate for children with autism and very often children with autism turn out to have far better reasoning abilities that a typical IQ test might suggest.

Autistic Passions Are Actually Obsessions

Most of the time, passionate people are either terrific lovers or truly dedicated individuals. You can be a passionate kisser, a passionate artist, or even a passionate sailor.

While some people with autism are passionate in the usual way, that's not what's meant by the term when used by autism professionals. Rather, the term passionate is used as a euphemism for perseverative, meaning unable to stop doing the same thing over and over again. Thus, a child with an "autistic passion" might feel the need to flush the toilet over and over again, watch the same video endlessly, or talk about trains to the exclusion of all other topics of conversation.

TV Talk Is a Disordered Form of Speech

When told that their child is engaging in "video talk" or "TV talk," parents or guardians may be delighted. Finally, the child in their care is using words and even carrying on conversations about a subject that interests others! But no. "TV talk" or "video talk" doesn't mean talking about a TV show; instead, it means talking like a TV show. Another more technical term for this is echolalia.

What is echolalia? Many children with autism (and some teens and adults as well) can talk, but instead of using their own words, they literally recite lines from favorite TV shows, movies, or videos. This can be a non-functional form of self-calming behavior (the words don't mean anything, but it feels good to keep repeating the same sounds). It can also, however, be the first step toward using functional language, especially when a child uses a character's words to say what they have on their mind.

Scripting Means Repeating the Same Words Over and Over Again

It would be reasonable to think that "scripting," for a child with autism, might involve providing the child with a script to use in a particular social situation. Or perhaps, for a higher functioning child, writing a script to use in an anxiety-provoking situation. But no.

As with video or TV talk, scripting is just another term for the same type of memorized sequence of words that may or may not be used for communication. It's called "scripting" because the child has literally memorized a script and is reciting it.

Rituals Are Repetitive Behaviors With No Functional Purpose

It's unusual to hear the word "ritual" at all—and when you do hear it, it's almost always in the context of religious ceremonies. Churches, synagogues, and mosques all have rituals (actions and words repeated in the same manner and in the same order every week) related to prayer, readings, music, and so forth.

So what is meant by an autistic person's "rituals?" When used in the context of autism, "rituals" are repetitive behaviors that have no particular function but which an autistic person feels they must complete. Such rituals are a symptom of obsessive-compulsive disorder but are also fairly common among people with autism. Autistic rituals may involve lining items up in a certain order, turning lights on and off, flushing the toilet multiple times, and so forth.

Self-Stimulating Behavior Rarely Refers to Masturbation

What could "self-stimulation" possibly mean? It sure sounds like a euphemism for "genital stimulation." And on rare occasions, an autistic child's behavior may include that, but most of the time it doesn't.

Self-stimulating behavior—often referred to as "stimming"—is actually a term used to describe behaviors such as rocking, finger flicking, humming, or pacing. These behaviors are not functional (they are not intended to have an outcome), but they do serve a purpose. In some cases, stimming can help a person with autism to stay calm when "assaulted" by sounds, smells, or bright lights. Stimming can also be a good way to calm anxieties.

Often, therapists work toward "extinguishing self-stimulating behaviors." By doing this, however, they may be depriving the autistic person of the tools they need to stay calm. In other words, a child may wind up trading unique behaviors for even more unique emotional breakdowns.

Stereotyped Behaviors Have Nothing to Do With Stereotypes

Stereotypes are those usually-incorrect beliefs people have about other people, based on their race, religion, gender, sexuality, abilities or place of origin. So a reasonable parent or guardian might assume that a stereotype related to autism might make an incorrect assumption about an autistic person on the basis of a diagnosis.

However terms used in the context of autism rarely mean what one expects it to mean. Stereotyped behaviors are the stims referred to in the last section of this article. They are also referred to, particularly in diagnostic literature, as "stereotypy," or "stereotyped behaviors." The DSM5 (2013) list of official autism symptoms includes:

Stereotyped or repetitive motor movements, use of objects, or speech (e.g. simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).

In other words, if an autistic person is lining up toys or using TV talk, they are engaged in stereotyped behavior.

Making Sense of Language

There are plenty of websites and books that list and describe terms related to autism. And when you see a technical term you're not familiar with (such as echolalia, for example) you might actually go look it up. The problem, however, is that so many of the terms used to describe autism sound familiar. How do you know what you don't know when you don't know that you don't know it?

The best way to be sure you're completely following the conversation is to ask questions whenever possible and to double-check your understanding. For example, you might ask a teacher, "I hear you say that my child is engaging in TV talk. Does that mean they're talking about TV shows?" Or you might check in with a therapist to be sure that their terminology really makes sense to you.

The same advice is important to bear in mind when you hear a teacher or therapist say things like "they're progressing," or "your little one is doing great!" Before assuming that you know what "great" really means, ask "what great things did they do today?" Often, you'll find that you and the teachers that care for your little one have very different ideas about what that word means.