Issue No. 58 February 2015

“Every time you state what you want or believe, it's a message to both you and others about what you think is possible.”

~ Oprah Winfrey


The Road Potholed with Good Intentions

“The road to hell is paved with good intentions.” We don’t know from whose sage lips these words first fell, or what woeful turn of events inspired them, but we take their meaning—that people act in ways they believe will aid a cause or further a goal, but in fact do not. The road we travel in our autism journey is usually paved knee-deep with our good intentions, but lately has become increasingly pocked with potholes of an especially vexing variety—the kind we gouge ourselves.

“No matter what message you are about to deliver,” former US Secretary of State Madeleine Albright said, “whether holding out a hand of friendship, or making clear that you disapprove of something, the person sitting across the table is a human being, so the goal is always to establish common ground.” While there probably isn’t an autism parent alive who hasn’t at least occasionally knuckled under to anger, frustration and fear, projecting those feelings onto the general public through social media, bumper stickers and other broadcast messages doesn’t establish that common ground, doesn’t invite empathetic dialogue, and thus ultimately hurts our kids. As we begin to craft our messages for Autism Awareness Month, let’s raise our own awareness too. Here are some messages I’ve collected over the past year that don’t work to our kids’ advantage.

Autism isn't a choice. You can't opt out of it by deciding to be a wimp. Would-be supporters can, though. They can choose to believe the melodrama and the horror stories, and decide they’re not up for learning more. And what is a wimp, anyway? People with autism and their families who are without knowledge and support may be weak or ineffectual, but they’re the very people who need our empathy and assistance, not name-calling. I'm always willing to admit that I'm a wimp about a lot of things. It takes a certain amount to strength to face that in ourselves, and begin to build fortitude and resilience.

Autism is indeed for wimps, and for jerks and dweebs and meanies, and also for people of uncommon courage and character, and for everyone in between. That’s why we call it a spectrum.

Better message: Autism is an equal-opportunity caller. May I tell you about it?

True, autism isn’t a disease. But neither is ignorance. We don't open minds to new thought by labeling people who lack information as ignorant or diseased. Autism isn’t something to be cured, and acceptance without interaction and integration isn’t enough. Children and adults with autism need accommodation, education and opportunities to contribute to and be a part of society within the scope of their abilities--just like everyone else. When society and community understand this and act accordingly, we'll see a win-win situation for all.

I can answer that. There's nothing wrong with either kid, but everything wrong with the attitude behind this bumper sticker. Does it open doors of understanding and connection that our kids so desperately need, or does it anger, insult and put the reader on the defensive? No matter how exhausted, frustrated and isolated we feel, lashing out at strangers who have done us no wrong sends a dreadfully harmful message not just to the community, but to our kids, and that includes our kids who are adults. They read bumper stickers too, and they are speaking out in ever greater numbers against messages implying that being like them is a fate to be dreaded and feared.

I'm not liking it. Let's beware going too far in emphasizing our kids' differences at the expense of recognizing and appreciating how much they are like all children.* The autism spectrum is wide. Two children with autism can be as dissimilar as snowflakes. Flip the sentence: I have autism too, but I’m not like you. Consider the many conversations Bryce and I have had over the years, on every imaginable topic, and know that when we talk matters of character and values, many times he ends with telling me, “I’m like you.” Whether one partner in the conversation has autism isn’t a criterion. We’re just two people talking, and often, finding common ground.

After decades of living with a concrete thinker, my first reaction was, I hope someone helps that child get his sensory issues under control because you can’t go around licking your classmates (or sniffing or poking or staring). My second thought was, what if the targeted honor student also has autism? Many honor students do. We don't build the vital community connections our kids need with bridges of snark. And while those of us familiar with autism get the double entendre of "lick," associating it with sensory issues, those unfamiliar with autism (unaware that concrete thinking is a characteristic) will see only the defeat/assault meaning of the word.

This is just plain vicious, meant to cause fear and anxiety. If you doubt it, why have I never seen a counterpoint bumper sticker? “My kid’s an honor student. Yours is next.”

When I see stuff like this, accompanied by a graphic of a child who likely never expressed such a thought, I have sad. Not only does it perpetuate the negative stereotype of spectrum children as hostile and void of social skills, it presents an either-or that isn't true and isn't helpful. Just as many people who don't have autism aren't ignorant, some people with autism are. One doesn't inure against the other.

More helpful: “You have misconceptions. I have knowledge and experience. Let's share.”

“Every time you state what you want or believe,” says Oprah Winfrey, “It's a message to both you and others about what you think is possible. Don't put a ceiling on yourself.” As we craft the messages about autism that we put forth to others, let’s think about what kind of ceiling we want to put over our children.

Autism itself imposes no inherent upper limits and is highly vulnerable to education, therapies, and perspective. The only ceiling I see is the retractable dome. Our messages should guide the collective hand of community to the controls that pull back that ceiling, inviting our kids to explore the question, how high is up?

*Further reading: Alike, Not Less: Fifty Ways Your Child with Autism is Like All Children

© 2014 Ellen Notbohm



This month on my Pinterest memes board

See more pins:

  • A child with autism never reaches “the extent of his capability.”
  • What you choose to believe about a child’s autism determines his success.
  • Listen to your inner voice. The “it” thing is never the only one.
  • The very first thing you need to know about autism . . .

Follow my Pinterest Memes board for new pins to share each week, or browse my other 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


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? Visit the archive on my website for past features.

  • The R-Word You Want for Your Child with Autism
  • When Great Expectations Aren’t–and Why That’s Great
  • Dude, where’s my IEP? Ten Things Parents of Children with Autism Want Principals to Know
  • Smarts and Crafts: Message in a Birdhouse

On my blog:

  • “Is our child suffering from autism”
  • Eeny, meeny, miny. . . no: A better way to choose an autism book
  • How to answer “How is he doing?”
  • How these autism parents stayed married
  • “My son is being suspended due to his autism.”


Writing your story? Contact me about affordable rates for developmental editing and writer coaching at

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.

All content in this newsletter ©2015 Ellen Notbohm