Issue No. 51, March 2014


No one would talk much in society if they knew how
often they misunderstood others.

~ Johann Wolfgang von Goethe


Autism Misconceptions for Smarties

What’s the difference between a smarty and a dummy?

Merriam-Webster.com defines a smarty as “a person who thinks and behaves as if s/he knows everything,” while a dummy is “a stupid person.” As an autism parent, the smarties vex me more than the so-called dummies. In my mind, the dummy wins the smarts contest over the smarty, because the dummy likely knows he’s not the brightest bulb on the porch, while the smarty thinks he’s the klieg light. Lack of knowledge doesn’t make a person a dummy but, to paraphrase the poet Alexander Pope, a know-it-all lack of willingness to learn is a dangerous thing.

As we head toward Autism Awareness Month, I reflect on the eighteen years since Bryce’s diagnosis. At that time, the incidence of autism was 1 in 750; now it’s one in 88. There were misconceptions about autism back then, but ironically, so few people even knew the word that as awareness and understanding grew over the next two decades, so did the array of misconceptions. Today, despite notable advances in education, therapy and medicine, we still joust daily with autism myths and fallacies.

Let’s knock a few down here:

Autism misconception #1. All children with autism have savant-like abilities.

Some children with autism have savant-like abilities. Most do not. Some people who don’t have autism have savant-like abilities. Most do not. Savants are rare, period. Many parents of children with autism resign themselves to fighting this fallacy with weary humor. When asked yet again about their child’s “special gift,” they reply, “Eating toilet paper” or “Hoarding batteries.”

Autism misconception #2. A child's meltdowns and anxiety attacks are intentional or manipulative.

Sensory overload, frustration, anger, persecution, fear, sleep deprivation, hunger, pain—for the child with autism, meltdowns always have a physiological or emotional source, and never come "out of the blue.” Not only are there numerous organic reasons why he might melt down, but the notion that he manufactures such distress to "get" the adults around him assumes a level of intent unlikely to be present in a child with autism.

Autism misconception #3. A child who is non-verbal has nothing to say.

If someone taped your mouth shut and took away your communication devices, would that mean you no longer have anything to say? Or would you have your same thoughts, needs, wants and fears—but no way to express them? All humans need a functional means of communication. We’ve designated speech as our gold standard of interpersonal communication, the emphasis on “using our words” so dominant that when children attempt to communicate nonverbally, we often don’t heed it. Yet words are only a small part of interpersonal communication. We communicate through the nuance, tone, inflection, pitch, speed and volume of our speech, through body language, facial expressions and emotional responses. It’s incumbent on us to listen to all the ways our kids are trying to communicate.

Autism misconception #4. If a child wants to have friends, he can't possibly have autism.

Many parents want their children to have the same rollicking childhood friendship experiences they had, while their child with autism shies away from gatherings of peers. But not wanting a mob of friends isn’t the same as not wanting friends. Every kid with autism I’ve ever met wanted friends, but most are content with just a few. In one of my books, a middle-schooler answers his mother’s anxiety about his having only two friends with, “I don’t want a lot of friends. I can’t handle a lot of friends. More than one at a time stresses me out. I can talk to these two friends about things I’m interested in. They are great for me.”

Autism misconception #5. Children with autism don't have the ability to empathize.

Whether motor, cognitive or social, not having skills does not equate to not having the ability to learn. Some kids with autism are naturally empathetic, but when they are not, empathy is as teachable as any other social skill. My own sons with autism and ADHD are among the most empathetic people I know, because that’s what they were taught, what we nurtured and valued in them. A child with autism will not absorb social sensibility by simply being around and observing people with social skills. Like all children, there are a great many things kids with autism don’t know how to do until they are taught.

Autism misconception #6. A child must make eye contact in order to comprehend verbal communication from another person.

Do we have to look at a radio to understand a newscast or the lyrics of a song? Sensory multi-tasking is devilishly difficult for some children with autism, especially when it requires a visually-oriented child to process auditory information. Looking away from a voice (shutting out visual distraction) often results in better comprehension.

Autism misconception #7. A child who has difficulty communicating verbally is of low intelligence.

Oh, the arrogance of this misconception. If the child doesn’t communicate in our chosen mode, and if we fail to provide the child with an alternate functional form of communication that is meaningful to him, how does it follow that he is of low intelligence? If we don’t give him means to communicate, we will never know how intelligent he is.

Autism misconception #8. If a child consistently scores low on standardized tests, she must be cognitively delayed in addition to having autism.

See. #6. Until tests are adapted to the communication abilities of the child with autism, the only thing being tested is the child’s ability to take a test designed for a brain with an operating structure different from hers.

Autism misconception #9. Autism is caused by bad parenting.

Bruno Bettelheim’s “refrigerator mother” theory was the original, ironically, the Mother of All Autism Misconceptions. Although now soundly discredited, it lingers like stale cigar smoke. So let’s fumigate, now and forever: Parents do not cause autism, and . . .

Autism misconception #10. A child can stop being autistic if he just buckles down and tries harder to behave.

Autism is not a choice. Sensory dysfunction, communication difficulties, social cluelessness, anxiety and fear are not choices. Being judgmental, making uninformed assumptions, declining to approach the child with patience, inquisitiveness, empathy and a problem-solving attitude are choices. In the adult-child equation, the burden of “buckling down and trying harder” belongs to the one with the vastly greater life experience.

The heroic social reformer Frederick Douglass refuted Pope’s “A little learning is a dangerous thing” with the warning that “the want of learning is a calamity to any people.” He also gave us an irrefutable truth we dare not ignore: “It is easier to build strong children than to repair broken men.” This is our charge, and this we do, every day, every time we reach out to dummies, smarties, and everyone in between, knocking down autism misconceptions, one mind at a time.

© 2014 Ellen Notbohm www.ellennotbohm.com

 


 

New translations of Ten Things

 

Portuguese and Slovak translations of Ten Things Every Child with Autism Wishes You Knew were released in the last few weeks.

My wonderful Brazilian partners at Inspirado pelo Autismo also posted a three-part interview on their Website.

Visit my Pinterest board, Ellen’s translations, to browse all translations of my books.


 

This Month in Autism Asperger’s Digest

 

“Autism Awareness is Not Enough”

What does autism “awareness” mean to you? Better question—what does it mean to those who think autism doesn’t touch them?

Autism awareness is no longer enough for me. Awareness that doesn’t result in action clangs hollow. A society can be as aware of autism as they are of the weather but if, like the old weather cliché, everyone grumbles but nobody does anything about it, awareness may then turn divisive and destructive, driving our children with autism farther to the edges of community. It’s time to move from awareness to action. . .

A happy Autism Asperger's Digest anniversary

This month marks the 10th anniversary of my debut article for Autism Asperger’s Digest, with eleven-year-old Bryce on the cover. Later the same year, I co-authored 1001 Great ideas for Teaching and Raising Children with Autism with Veronica Zysk (still my muse), and wrote my first of 53 (and counting) columns for Digest.

As for Bryce, the words for all that awaited him hadn’t even entered my mind: athlete, filmmaker, voter, traveler, valedictorian, driver, worker, college student. This month he applied for admission to an out-of-state college. Flub-dub went my stomach as he pressed the Send button. On to Chapter Next, for both of us!

 


 

Visit my new Pinterest boards

 

Follow my Ellen’s Quotables board on Pinterest for images to share, or browse boards of book reviews, articles, interviews and translations. Got an idea for a board you’d like to see? Contact me through my website or directly at emailme@ellennotbohm.com.


Downloadable PDF summaries of Ten Things Every Child with Autism Wishes You Knew and Ten Things Your Student with Autism Wishes You Knew now available on my website.


Did you miss my last newsletter? And You Can Quote Me on That is a sampling of the posts and tweets of the past year that most resonated with readers. (Yes, this spawned my new Pinterest board.)


Writing a book? Contact me about affordable rates for developmental editing and writer coaching at emailme@ellennotbohm.com


Excerpts from all my books are on my website, including full chapters from Ten Things Every Child with Autism Wishes You Knew and Ten Things Your Student with Autism Wishes You Knew. www.ellennotbohm.com


©2014 Ellen Notbohm | Third Variation Strategies